Sarcoidosis and GERD

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Is there anyone out there with symptoms like mine? I have been unwell since last October after second endoscopy I was diagnosed with small hiatus hernia and some inflammation and also after CT scan biopsy revealed sarcoidosis in my chest.

Have been prescribed Esomaprazole (which doesn't help) and Domperidone (which gives me some relief).

Doctors are not treating sarcodosis as they said it wasn't 'severe' enough but i have a follow-up appointment for December.

I am in-between seeing Gastroenterologist specialists. Manomentry has shown that my LES is too tight and I have just been prescribed Adalat but this has, so far, made the pain in my chest worse!

I have chest pain/heartburn everyday which gets worse as the day progresses - not sure if pain is heartburn or sarcoidosis is causing the pain.

I would be very interested to hear from anyone with similar symptoms or knowledge. I am desperate and giving up hope of ever getting better.

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13 Replies

  • Posted

    Hi Lynne

    I don't have any of those types of symptom but a lot of them sound like they're related to the hiatus hernia you mention. Heart burn type of chest pain is often linked with that, especially if it gets worse as the day goes on. Mainly because its linked with your digestion; if you have a hernia you can be at greater risk of acid reflux, which in turn is more likely to happen when you've eaten as thats when the digestive enzymes kick into action in a big way. 

    Having said all that, I know some of the others who post on this site do get chest pain related to sarcoidosis but I think it tends to be more in the area of the chest lymph nodes. Hopefully some of them will see your post and comment on their experiences.

    My doctors didn't treat sarcoidosis to start with either, while they got a definite diagnosis and while they determined how badly it was affecting me. Think its a lets not try and bombard the patient with medication unnecessarily. Depending on whether or not it affects your breathing they might want to give you oral steroids at some point or maybe a steroid inhaler. At least they have a follow-up appointment set up for you; if you feel things are getting worse before then I'd say contact your GP, explain to him/her and ask if the appointment can be brought forward. 

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    • Posted

      Hi Morag,

      Thank you for your reply and advice.

      My hernia is apparently only small - 3cm - and doctor says is should be controlled with medication, but isn't. I have had two manometry tests both showed that my sphincter was too tight so, logically, it doesn't sound as though my pain is reflux.

      Anyway just have to keep on punching and hopefully I will get there in the end.

      Best wishes,

      Lynne

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  • Posted

    Hi Lynne,

    only a pneumologist can tell you if your chest pain is related to sarcoidosis or not. I have pulmonary sarcoidosis, and I usually get chest pain and difficult breathing every time it exacerbates. I am going through an exacerbation right now; I'm already on steroids because my doctor saw some new scars on lungs. My breathing improved and chest pain almost disappeared after about one week on prednisolone. However, it varies from patient to patient.

    It may also be a combination of both conditions, so it is much better to talk to your doctors. Also, always tell your doctors which treatment works and which doesn't. It's not an exact science; while some treatments work for some patients, others may not work. So, your doctors can't decide on the best treatment if you don't tell them how you feel, and which drug helps you more.

    If they will put you on prednisolone or other steroid drugs, ask your doctor if it's necessary to take some calcium + vitamin D3. although this combination may not be appropriate for sarcoidosis, it's important to ask your doctor as prednisolone may cause osteoporosis if used over the long term. However, do not take calcium and D3 if your doctor does not prescribe it to you.

    My doctor waited for about a year before putting me on prednisolone. Sometimes, sarcoidosis stops without any treatment, so it would be a pity to give someone unneccessary medication. If your condition will not improve by december, your doctor will probably re-evaluate your case and decide on the best course of action for you.

    Wish you all the best,

    Magda

     

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    • Posted

      Hi Magda,

      Thank you for your reply and advice. It is good to hear from someone who understands as sometimes I really feel as though I am 'all at sea'.

      After the biopsy I did have terrible pain in my chest (boring, heavy pain) which I still get now but not quite as severe. This is why I wonder if my pain is related to sarcoidosis.

      Best wishes,

      Lynne

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    • Posted

      Hi Lynn ~

      Sorry to hear you're going through so many different symptoms...painful and uncomfortable.  I also have sarcoidosis and sjogrens.  My sarcoidosis has always effected my lungs but recently while hospitalized, they found a new larger nodule in the middle of my right lung.  I don't experience pain but I do have a hard time breathing.  Currently on oxygen, inhaler, Nebulized therapy and advair 250 twice a day...sounds like a lot of medication but it does help. I'm stage 4 sarcoidosis and since this new nodule has appeared, I'm probably going to go on methotrexate...I was on steroids for 2 years and I told the doctor this time around I wasn't going to do steroids again.  Methotrexate seemed to keep the sarcoidosis under control in my lungs. 

      You'll probably find out more at your next appt.  Have they told you they would probably do a pulmonary function test?  It just tells the doctor how well your lungs are doing.  That also will tell the doctor if your sarcoidosis should be addressed with medication.

      GERD, I was dx'd with that I believe in 2007 and also was told I had a double hernia.  I take a med in the morning and one at night and it's put the burning and pain almost to null!  The medication is prescribed zantac and prilosec, can't recall the dose.  But, the good thing, it really helped so if this is your problem, there is a light at the end of the tunnel!!

      Keep us posted and I wish you well.

      Frustrated

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  • Posted

    Could the pain in your chest be due to inflammation as I get chest pain. Have you had chest X-ray? If not ask. I prefer to use herbal remedies rather than steroids but that is with my GPs blessing. If you aren't happy go back and talk to your doctor.

    regards

    Rachael

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  • Posted

    Lynne

    Yes sardcoid does cause chest pains.

    The white blood cells get the wrong message and attack the lung tissue thinking it is infection. It goes about its job to protect you from all bad things.

    Unfortunately the lung tissue is good and does not need to be destroyed by the white blood cells.

    Sarcoid also causes inflamation where the white blood cells become over active and form small granuloma in joints etc.

    Thus there two reasons while sarcoid will give you chest pains.

    Phil...Tangles

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    • Posted

      Doctor's don't seem to want to treat my sarcoidosis as yet. I have to wait until December to see the chest specialist.

      I have just received another appointment to see yet another gastroenterologist but not until 11 October which seems like an eternity away!

      The pain in my chest & back was extremely bad last night when I went to bed.

      Sick and tired of it all.

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    • Posted

      Hi Phil ~

      Your questions came in handy today and thank you for that!! here is what I know so far:

      I just came back from the Cardio doctor and I do have cardio sarcoidosis.  I'm going in to have some tests done on Oct 6 to determine what stage of cardio sarcoid I'm at and/or if I need to have a defibulator (pace maker) put in place.   Currently, I'm stage 4 with pulmonary sarcoid.  I don't like to get hung up on numbers because what is a 4 to me could be a 2 for you...know what I'm saying? 

      I'm pretty depressed at present but I will pull myself up and move on.  I usually do.   I do have to admit the reason I'm depressed is because the unknown.  I just want to be around for my youngest daughter, she due with her first child Oct. 5. 

      I am too scattered right now so I will write back in a day or so when I pull my bootstraps up and get my act together. 

      Next stop, Pulmonologist to treat the new granulomas in the lungs. Wish me luck!

      Please, know that I value your input and support.  You are a very special person!

      Frustrated

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  • Posted

    Hi Lynne. I have just been reading, on an American meds site that there is an interplay between Sarcoidosis and Gastric Reflux. Acid reflux in the back of the throat can irritate the lungs which makes Sarc symptoms seem worse. And the mucus from the lungs, apparently can irritate the stomach if swallowed.  I personally experience both. The Sarc is treated with inhalers at the moment, and I am buying Gaviscon for the reflux (though may go back to my GP to check this). Good luck, and don't despair. You can get relief, if not a cure.
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