New Sarcoidosis Diagnosis

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Hi I'm a 46 year old female recently diagnosed with Sarcoidosis which was confirmed by a chest lymph node and lung biopsy. I have several symptoms that are quite severe such as blurry vision, shortness of breath, difficulty talking due to raspy stressed voice and breathlessness, fatigue, sore joints and rash and itchyness on my right rib cage. These symptoms have been going on since June 2016. However some symptoms have been longer.

I am waiting to see my new Respirologist however I am worried and would like some input on the severity of my symptoms. Am I very sick?? As some days I feel as if I can't get outta bed. Please help?

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  • Posted

    Hi,

    I'm sorry you're going through so much. Sarcoidosis can be a very frustrating disease. Can I ask you a couple questions? I could then write a better response. I've had sarc since 1999 and I've learned so much over the years.

    - how long ago was your diagnosis?

    - what medication(s) are you on for your sarcoidosis?

    Thanks,

    Deb

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  • Posted

    Hi there

    Firstly sorry to hear you have Sarcodosis. I was diagnosed when I was 28 and for the past 10 yrs have had flare ups when I have had to take time of work and medication, antibiotics and steroids.

    I was also confirmed by having a lung biopsy and fibrosis was found on my lung. I also get flare ups of iritis.

    The last two years however have been really tough and the fatigue is horrendous. But not everyday is not a bad day. Even I have been off sick with Sarcodosis again the past few weeks and I am not ready to go back to work yet.

    I hope you're not too sick and for many Sarcodosis can clear up on its own although every case is different but most have similar experiences at some stage.

    As I have gotten a little worse I am still trying to get my head around it all. I think my head has been in the cloud with this condition.

    I hope you get some good news and lots of info to your questions. Sorry I can't be more useful to your questions but know there is support for you xx

    Keep us updated.

    Love

    S

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    • Posted

      Hi S,

      I'm so sorry to hear about your struggles with this disease and appreciate the information you have shared.

      I have been sick for quite a long time but thought I was just working to much.

      If you ever need a ear to listen please let me know. I will let you know how things go once I meet the new doctorsmile

      Cheers,

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  • Posted

    Hi, your symtoms are exactly the same as mine - I was diagnosed last June.  After being put on a high dose of steroids, which are thankfully now reducing, many of the symptoms have gone.  I am still breathless though and have trouble with tiredness.  I have found that having a sleep for about an hour during the day livens me up again.

    Hopefully all the symptoms will eventually go.  Try not to worry too much, although I appreciate how scary this rotten illness is.

    Good luck.

    I.

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    • Posted

      Hi Irene,

      Thank you for your reply. I wouldnt wish this on anyone but it eases my mind to know there is other people out there living with this terrible disease.

      Are you saying that you have been on the steroids since last June? I understand they have terrible side affects?

      I hope you go into remission soon....or is that just a wishful thought with the symptoms we have?

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    • Posted

      Hi Irene

      I suffer from extreme fatigue. Is this normal? It's difficult for me to bring under control as I work shifts and can never get into a proper night time routine. That's in addition to the coughing, hoarseness, never feeling rested and constantly feeling flu like symptoms.

      Hence why I am off sick at the moment. I just crashed and burned and 6 weeks I am not really any further forward, well a little better which is a positive.

      Have you taken steroids long term and did they work? I have only had short courses but haven't had much success.

      Any info would be greatly appreciated.

      Thanks

      S xx

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    • Posted

      Hi Char,

      Overall I was on prednisone for 9-10 years in the past 18 years. I gained so much weight, up to 100lbs one time but thankfully I lost it after getting off and much hard work. Prednisone gave me diabetes II, hypertension and insomnia as well. I had heartburn as well. I ended up in several medications because of these side effects.

      I fight fatigue something awful. This is normal with sarcoid, I've learned. I used to get out of breathe with simple activities. Now that my lungs are in remission, I don't get breathless as easily. I would feel like I had an elephant in my chest.

      I get sick easily and have always caught chest colds just by looking at someone sick. I didn't before sarcoid.

      The majority of people do go into remission after around 3 years. A lot of people even sooner and a good bit of patients don't need any type of therapy. There are a small amount of patients (like me) that fight it for long term, have multi-organ involvement and require higher level of treatments. These are newer statistic that I've just read.

      I started in my lungs with all the symptoms you have mentioned, I'd had problems for a good while before they found it. Since, the sarcoid moved to my bones. This week, I was diagnosed with hypothalamic sarcoidosis and neurosarcoidosis. It is so frustrating to know it wasn't done when it hit my bones.

      I've continued to have blurry vision, also, but it's gotten much worse for me.

      Your symptoms are pretty much normal and I would try not to worry as you should react to the treatments and hopefully, be able to go inactive in your lungs.

      I've been on prednisone, methotrexate, plaquenil, humira and remicade infusions. I'm currently in methotrexate, plaquenil and the remicade.

      I'd make sure your pulmonary specialist stays on top of your lungs with chest x-rays on a regular basis to make sure the treatments are working properly.

      Hope all the other (awesome) responses, and my response, has helped some. Like the others said, please know you're not alone and we are here for you! There is also a wonderful support group that's for women only on Facebook that I found. I love it, everyone is so helpful and so so supportive. It's called Sarcoidosis Women.

      Take care,

      -Deb

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    • Posted

      Hi.   Yes, I've been on steroids since last June, but thankfully, these have been SLOWLY reducing since then.  I did have a flare up about 3 months ago and had to go back on a high dose for one week which has been reducing since then.  The side effects differ from person to person - some get none, others can get a lot.  Unfortunately it's trial and error and the docs can't predict it before hand.

      You never know we may be some of the lucky ones who only get it once???

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    • Posted

      Hi,   I was initially told be my specialist (who retired the same month I saw him and hasn't been replaced by another specialist!) that it's best to be on steroids for a year to get rid of the sarcoid.   I started on a high dose which has gradually reduced (went up for one week due to a flare up and then started reducing again).

      I have got the same symptoms as you and find that sleeping for an hour during the day eases the fatigue and tiredness.  I have a fan by me which helps when I get a hottie (flu symptom) - drives my partner nuts as one minute the heating goes on, then off as the fan goes on.   Pain isn't it.

      This just makes me feel useles as I don't seem to have the body strength or stamina that I had before.  I hope it comes back IF this sarcoid goes???

      Hope yours doesn't last too long.  Wish you well.

      Irene.x

       

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    • Posted

      Hi Irene,

      Thanks I appreciate hearing some positives and I'm glad to hear your doing well. I hope my health heads in the right path soon as it's been a very long time since I've felt well.

      Take caresmile

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  • Posted

    Hi Char,

    I was diagnosed with pulmonary sarcoidosis in march 2016. My symptoms before diagnosis were very similar extreme fatigue, constant coughing, shortness of breath, night sweats, sharp stabbing pain if I moved a certain way.

    I have been on steroids since my diagnosis. I started at 30mgs daily and I'm down to 5mgs which will be reducing to 4mgs next week.

    It is a horrible and frustrating condition. I was off work for twelve months just went back three weeks ago but I'm only doing two days a week and I'm wrecked after each day but I have a very busy job as a community nurse.

    Steroids have side effects for everyone. Mine were weight gain and being very angry which is scary. Some people find they have trouble sleeping.

    I'm sorry you have this diagnosis as its a tough condition plus you look normal on the outside to others so they think there isn't anything wrong with you which is so unfair and if only they knew what it feels like.

    Hope this helps. Feel better soon.

    Polly

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    • Posted

      Thanks for the reply Polly,

      I'm so sorry to hear about your struggles with this terrible disease. I hope things turn in the right direction for you soon.

      I totally understand about people thinking your fine because everything looks fine on the outside. I have been unwell for quite sometime and alot of people thought it was in my head or I was being lazy! At least now we know and I can move forward.

      Let me know if you ever need someone to chat with.

      Cheers,

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    • Posted

      Hi Polly, I also have pulmonary sarcodosis and would love to talk with you about it...I have been very sick for 12 year's but have only had the sarcodosis diagnosis for about 2 year's. ...I'm wondering if you are also on ambrisentan ??

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