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Just a catch up

Posted , 4 users are following.

AmandaPC
AmandaPC

Hi all,

Well I haven't been on here in a while so but all is good. I'm on 5mg a day now with the steroids, the usual stomach tabs and bone tabs. I have had some problems with my stomach and I am due to vistlit a gastro doc.

I'm due an ultrasound in a few days for my kidneys hopefully all will be clear.

I will be going to see my sarcoidosis doc in Sept so fingers crossed all will be ok.

I have been enjoying life, working away, going on holiday (trying to stay out of the sun lol) and of course looking after our daughter who keeps me on my toes.

Some days are great and I have good energy till about 8pm, other days I'm exhausted but that's part and parcel of what we all suffer from.

Keep your chin up guys, it's could be worse.

3 likes, 8 replies

8 Replies

  • david96615
    david96615 AmandaPC

    Posted

    Good to hear Amanda. I'm pleased it not an easy path and those steroids are the worst. I can't seem to get past 10mg. I can relate to the tiredness too from 4pm l struggle to keep going by 8 that's it. 

    Take Care 

    David

    • AmandaPC
      AmandaPC david96615

      Posted

      Hi David,

      How long have you been on 10mg?

      Trust me till 8 pm is a great day.

  • david96615
    david96615 AmandaPC

    Posted

    Hi Amanda

    been on 10mg for 4 weeks now was as high as 70mg.  Waiting to start Infliximab infusions which should bring relief. I was in remission but after the last PET/Ct scan everything has changed again. Also taking Mycofenolate and philoxin

    David

    • AmandaPC
      AmandaPC david96615

      Posted

      So when did you start the steroids? 70 is high.

      I started on 35-40 mg, it's so long now I forgot but during the time it has fluctuated depending on infections and different illness. I may be on 5 mg for the foreseeable future but the doc cant promise anything.

      Where is the Sarcoidosis David if you don't mind me asking? And when we're you diagnosed?

  • david96615
    david96615 AmandaPC

    Posted

    Hi Amanda, I was diagnosed 2 years ago. Been on Prednisone from the start, started on 40mg got down to 7mg but got sick again and was increased back up to 70mg been coming down since Oct last year. I have it in my heart, lungs lymph nodes, some eye impact and skin issues. Also dealing with Pherial Neruopathy. 

    David

    • AmandaPC
      AmandaPC david96615

      Posted

      Oh on your heart. My main worry was my brain but that came back clear after my mri. However I've it on my spleen my liver my lungs my leg and now I'm going to see if it's on my kidneys. My first time around I didn't take steroids, but almost two years ago like you I was put on them and have stayed on them since. But I've had bouts of being in hospital, last time was for a bowel infection which was really bad. But there is always something going on so steroids are up and down. Sometimes I feel double my age and I'm on 36

  • david96615
    david96615 AmandaPC

    Posted

    Hi Amanda, I also show on PET/CT as having it in the kidneys and Liver is affected. The drugs can be as bad as the disease. I should mention I also had a Defibralator and Pacemaker attached to my heart    . I hope it all settles down for you take care.

    David

  • rae2002
    rae2002 AmandaPC

    Posted

    Since doctor increased My prednisome  from 10 to 40 mg it gives me enough energy for the both of us!!!!  I went to well know acupuncturist in Sarasota Florida while on vacation.  Wonderful man.  Gave me herbs to take - before that I had been tired.  Not tired anymore, especially on 40 mg pred .  Eyes (stigmatism issues due to prednisone, shortness of breath, tiny heart issues, and shortness of breath)  But - You are absolutely correct - it could be worse!  Thankful mine isn't.  

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