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Sarcoidosis worse than ever in my lungs and heart, so depressed

Posted , 11 users are following.

Felfin
Felfin

Hi all,

I came across this forum and thought I would see how it works. I do a couple others, but there are so many of us on those that sometimes it's hard to get a response. Anyway, I am in my early thid ties, married with one son. I was diagnosed with sarc in 2006, in my lungs then my heart. I was on prednisone and methotrexate and received a defibrillator implant. After a couple years, I seemed to be stable and so have enjoyed pretty good health since around 2009.

But now I am worse than ever. My lungs, which never caused me problems, except for their appearance on scans, are terrible. I can no longer oxygenate my body. I am on supplemental oxygen. My heart jumps from too slow to too high in seconds and my ICD registered 22 episodes of tachycardia last month. I am waiting for treatment at Royal Brompton in six weeks, but don't understand how they can keep me waiting after what they said while I was there last. I am to get IV steroids. 

I get some support, have a great husband and all, but I am just so depressed I don't know what to do with my time at the moment. I have written to the hospital with some new developments with my symptoms in hope they will admit me sooner, but I'm not counting on it. I would love to hear from anybody who is struggling similarly or ah say advice. Thanks. X

2 likes, 36 replies

36 Replies

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  • kirsty1963
    kirsty1963 Felfin

    Posted

    Hi, so sorry to hear your sad story, I too have it in lungs but not heart, instead I have cardiomyopathy. I have got new recent sarcoidosis activity in my breast and bile duct after having gall bladder removed due to it. The depressing news is new activity in my brain so leaving me more disabled and often talking is difficult due to it being in the so speech centre. The reason I tell u my story is that I'm on a new drug called mycophenolate this has given me massive improvement for 2 years although I'm going in patient at chairing cross for top up steroid also this week as sarcoidosis is active and we need to blast it,

    The Mycophenolate is used massively in America and has excellent results if you haven't tried this perhaps it maybe a suggestion to try.

    I hope you this helps in some small way, I look forward to hearing more

    Regards Kirsty

    • Felfin
      Felfin kirsty1963

      Posted

      Thanks, Kirsty. Right now I am just waiting to be admitted to hospital to receive IV methylprednisolone. Will see how I respond and keep mycophenolate in mind. I'm not sure if it's often used for cardiac involvement...? I know methotrexate is, was on it before and it seemed to help. I just hope something sorts me out, and soon! Best wishes. 
  • morag7
    morag7 Felfin

    Posted

    Hi there

    I'm in Scotland so not too sure if it'd work down in London or not. But my GP, who is very supportive, always tells me to try and talk to the consultant's secretary if I want an appointment moved up the list a bit. They quite often know better than the consultant when he/she is free and can see the entire list to see if there are any spaces. Plus you also tell them you'd accept a cancellation even if its fairly last minute. 

    June is right too, some of the issues may be around your defibrillator starting to malfunction. A friend of mine has had to have his one tweaked 2 or 3 times in the 5 years I've known him. Its an easy procedure that doesn't even involve you being taken in to hospital if that is the case.

    Hope all of you currently suffering badly get some help soon!

    • Felfin
      Felfin morag7

      Posted

      Hi Morag,

      thanks for the message. I have emailed the ward. Unfortunately, I am not just waiting for an appointment, it's a four day admission. So, I know it's hard to fit me in for everything I ended while there. But, I am really struggling here so hope they can do something for me soon.

      I suppose it's always possible, but my ICD seems fine and the episodes are identical to ones I had before and it makes sense my heart would be affected since we know the sarc is going a bit mad in my body at the moment. Checking the ICD is indeed simple, it only involves placing a magnetic wand over the device and running various tests and changing settings and all. It is only if it really does malfunction or a lead breaks or something along those lines that it would mean going into hospital and being opened up again. Best wishes to you.

  • dominique666
    dominique666 Felfin

    Posted

    Hi sorry to hear your going through hard times atm. I've recently had a biopsy to determine if I have sarcoidosis or lymphoma as they cannot tell which one it is.  I have trouble breathing to.  What were your first symptoms and how long did it take for you to get a diagnosis?

    Best wishes

    Dom

    • Felfin
      Felfin dominique666

      Posted

      Hi Dom,

      thanks for your message. Many of us were faced with the lymphoma possibility in the beginning. Being told you have sarc is a relief, but it can sometimes turn out to be worse than cancer! Not to be a downer. Cancer is terrible, so is sarc, or at least, it can be. Either way, I hope yours is not severe and can be treated easily. My first symptoms back in 2006 were actually what I thought were more neurological. I had a cranial nerve palsy in 2005, so became very worried about a brain tumour and MS when I began to have dizzy spells, strange wet, hot and cold, pins and needles sensations up my legs, almost numbness, muscle twitches all over my body like crazy, and then 'brain fog'- I suddenly couldn't spell anymore (used to be fantastic), began to switch words and syllables around when speaking, couldn't find the word I was trying to think of, etc. Also, I was just feeling fatigued and full of malaise, a bit depressed (of course, some people were telling me it was all in my head, which didn't help). I just didn't feel right and knew something was wrong. I actually had no lung symptoms for years and no cardiac symptoms until 2007. Then I had palpitations. My spinal MRI revealed enlarged lymph nodes. From first dr. Visit in 2006, to diagnosis was about 3-4 months. I do think I had it when I had the palsy and maybe even in 2002, when I had a strange mumps-like problem for months. So, I was lucky in 2006, but depending on how you look at it, it either took me years or months to get properly diagnosed.

      It was only about nine months ago when I first began having breathing issues. When I walked too fast or too long, I get out of breath. Especially when I tried to carry a laundry basket up the stairs, I would get all dizzy and breathless. I'd have to sit when I got to the top to recover. This was just up a normal domestic staircase. I also noticed when I walked the half mile to pick my son up at school that if I tried to chat to friends when I got there, I always had to catch my breath. People would comment that I was all 'huffy and puffy'. 

      Anyway, now I am on oxygen and it does help a bit but I am hopeful some real treatment will actually improve my lungs. They just don't give the rest of my body enough oxygen.

      Good luck. Wishing you all the best and keep me posted. If it turns out to be sarc, please keep in touch. X

    • dominique666
      dominique666 Felfin

      Posted

      Jeez you have rely be through the mill. One thing that does come to mind is what you said about brain fog. This has been happening to me of late but I've thought nothing of it.  Will let you know the result 

      take care

      Dom xx

    • Shazarr
      Shazarr Felfin

      Posted

      Felfin I've just read your first symptoms and I have exactly the same, so much so is it's scary! I had a brain scan to rule out MS then they thought it was CFS but last week I had a ct scan which showed sarcoids behind my heart and lungs, do you mind me asking where your sarcoidosis is? My lung x ray was clear and I never ever cough but I have the tingles, numb patches, breathlessness, muscle jumps (you can watch these they are so crazy) dizziness, horrible fatigue, and the tingles (which I call whooshes) are all over, legs, head, arms, back! I haven't seen my doc yet so I don't know much yet but I was honestly feeling like a complete hypercondriac with my list of problems as long as my arm! I have been on amitripilne for the nerve pain but I guess that met change now. I hope you are having a 'good' week x
    • Shazarr
      Shazarr

      Posted

      Sorry me again I've just read the rest of the discussion doh! I only joined today so forgive me! One quick thing though felfin, I was on prescription co codomal for 3 months and the neurologist I saw was horrified by this, I took them every 4 hours cos they made me feel not so ill, but he said they are addictive, you get an instant come down when you try to stop taking them, so he prescribed a low dose of amitripyline but not for depression but as a pain killer. They don't suit everyone but I have 10mg every night and I no longer need paracetamol or cocodamol of ibrofrufen, I think it has really worked for me but I realise we are all very different. Take care x
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