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Just because i want to moan!

Posted , 6 users are following.

katld
katld

So its 2.40 am I didnt finish work untill 11pm and after a 11 hour shift i feel pretty crap i am bloody shattered and cant sleep..... really!!!!.

So steroids! I am not getting on well with them. Feeling real blooming awful! And i never got all this pains before i started them. And my lungs feel worse then they ever did before! Is it not possible all they are doing is making them more agitated??

I am so fed up of feeling tired! And feeling crap for the last 2 weeks.

I started my tablets 60mh a day fot a week 55 mg second week 50mg 3rd week 45 4th week and so on and so on. And my specialist says "whatever you do dont stop taking them" ok then so what do you do when you feel so bloody awful and you have left several messages asking for a phone call back as you cant get an emergency apointment rawr! I know your busy and you cant see every single patient and every single moment a day and you do an amazing job (my gp and doctors surgery are actually very good) but its still frustrating today!

So i cant sleep and im so uncomfortable and the pressure in my chest is horrible and the more im worrying the less i can sleep. Hence the rante! Haha!

On a plus note i have all of sunday of work! And its nearly christmas smile

Sorry about the moan guys! Just wanted to let of steam!

0 likes, 28 replies

28 Replies

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  • irene88807
    irene88807 katld

    Posted

    Hi Katld.  This sarcoid really is a pain - in more one's than one!.   I think it wise to discuss with your doc/specialist about permanently coming off steroids as you may be able to get down to a low maintenance dose?  It's something I'll have to consider when the time comes.  All I know for definate is that I dont want to be as ill as when it first started in Feb this year but neither do I want to have the side effects from long term use.  I look like the father in the trebor mint  with the fat face (Ha.Ha.)and I hate it.   Have not considered alternative drugs at the moment - I understand that they are chemo drugs used as anti-inflammatories?  Scary.

    I live in Norfolk and my specialist retired in June and has not been replaced, so I've been seen by different respiraatory doctors at each appointment since; so although I've no complaints about them they are not 'specialised' in sarcoid.

    Keep on ranting if it helps.  All the best.rolleyes

    • katld
      katld irene88807

      Posted

      Ohhh dont worry im sure you rock the sarky face look haha!!!! How much did you start and is predisone and predisolone the same drug? I actually have felt worse since starting the medication then what i did before. Surley thats not a good sign lol. And hopefully your new specialist will be just as good as your old if not better. Ibe only met mine once and the jurys still.out lol x
    • irene88807
      irene88807 katld

      Posted

      The two named drugs are the samecryand unfortunately the side effects seem in lots of cases to be worse than the sarcoid if we're unlucky and guess wht it seems we are LOL.  Don't know when specialist will be appointed but I've heard that MILLIONS have been paid to a consultancy firm for the next few years to improve services?????  Are you in the USA? Are the docs more sympathetic to the various aspects that come with the sarcoid? Or can they be dismissive as they seem to be here - maybe it is because it is such a mysterious complaint?    It sure has us complaining anyway.lol

    • katld
      katld irene88807

      Posted

      Nope im from the uk midlands! And ohh right my doctor the jury is still out on ive only met her once if im honest an im still debating weather im going to do steroids again as this dose has not helped me. And i cant be dealing with no more weight gain! Actually my chest feels worse now then what is was when i very first started having my symptoms. Which wasnt alot it was found by accident. Never mind eh. And haha i like moaning!!!! How are you feeling x
    • irene88807
      irene88807 katld

      Posted

      About the same - tired - had a lot of coughing last night - seem to have mucuous stuck in my throat since this bagan and wont move!  Go down to 20mg tabs on Sat, so am hoping that will be an improvement.

      How about you, how are you feeling today?xsmile

    • katld
      katld irene88807

      Posted

      Im ok thanks tapered down from 15mg to 10mg today smile so probably gonna have a few rough days. But ive been feeling more human today took my little girl to town and the park in the lovley freezing cold and rain gotta love the uk weather!!! X

  • terry57082
    terry57082 katld

    Posted

    Complain all you want Katld, we have the right, and we bloody sure need to vent to someone. I get so fed up with all the sarc issues that sometimes I pray for God to take me from this earth just to stop all of this. No one understands except someone else that has it. Guess I ended up venting a bit myself. God bless and I hope you have a good Christmas. confused

    • katld
      katld terry57082

      Posted

      Hey Im not sure why they deleted my comment? Ending all this is such a sad thing to say. Specially when there are so many beautiful things in this world! Sorry to hear sounds like you must of had it rough!!! I hope tjay theyfind something to help your sarcoid are you currently taking anything. Im just about ti start my own stuff in hope it will work. I have 2 more weeks and im off steroids and i want to avoid ever going back on them unless completley desbrate x
    • katld
      katld

      Posted

      Bdw merry christmas to you too. Xxx
    • irene88807
      irene88807 terry57082

      Posted

      Terry,  just seen your comment to katld.  Please don't give in to this horrible condition.  Are you on steroids?  It sounds like you have depression and need to see your doc about it.   I'm  sure we have all felt this way at times, but just remember we are here to support each other.

      It's true that no-one can understand this other than a fellow sarc sufferer and all the different things this entails.

      If it helps to have a vent, you carry on - we understand even if others don't.

      Try to be positive and have a good christmas.smile

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