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Sarcoidosis

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  • I'm new to this...

    Hi.  Two days ago I was told that my CT scan shows sarcoid and have my first appt with pulmonologist at the end of the month.  Besides that I presented with uveitis in both eyes and after being treated for pink eye for 4 weeks I finally decided to go to my optometrist and found out that it...

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  • Doctor that treats cardiac sarc in the UK?

    I have mild cardiac sarcoidosis. Also in lungs and extensively in lymph nodes. The cardiologist I've seen said no treatment required as it's mild in heart. He's discharged me. With no follow up or monitoring at all. Which concerns me as I know cardiac sarc can progress quickly and with little...

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  • Just a catch up

    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...

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  • Diagnosed December 5, 2017. 30 mg of prednisone

    Diagnosed December 2017 in my lungs. 30 mg of prednisone then tapered off to 15 Jan 7th. Within 2 weeks back with major SOB. Put me of QVAR inhaler.  Within 10 days I had muscle weakness really badly in legs but also in stomach area, arms and hands. Monthly x-rays show granular nodules going away...

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  • Recently I was diagnosed with Sarcoidosis in my Lung

    Hi everyone and I think this group is very educational. My doctor ha just recently diagnosed me with Sarcoidosis in my lungs and thinks it's at the early stage of 1, my question is how fast the stages can advance? I go for another CT scan in 3 months along with another ACE test, is 3 months too...

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  • Flare Ups

    Hi, I was diagnosed 2 years ago and gone through many visits to specialists until we found the answer in Infliximab. Whilst still on most of my Medications I find my self heading down the road of Flare ups. I was told in January that the Sarcoidosis had gone into remission, 6 months on its back. Had...

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  • Diagnosed with sarcoidosis in lymph nodes

    February of 2016 I had been having Chest pain so one morning I stopped by the er to make sure it wasn't my heart. After a Ct scan and some lab work they decided to admit me into the hospital. The Ct scan did so abnormalities in my chest area so they did a pet scan and they told me they thought I...

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  • Sarcoidosis and muscle weakness(waste)

    I was diagnosed with Sarc December 2016 put on 30 mg of Predinsome.  Worked wonderfully!  Breathing much better!  Xray one month later and lungs had begin slightly clearing so decreased me to 15 mg.  2 weeks later began worse SOB so instead of going back to 30 mg of Predinsome he...

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  • Additional meds prescribed for sarcoids

    My husband was diagnosed 18 months ago with pulmonary sarcoid . He has completed a couple lengthy stents of high dose prednisone with minimal improvement. He continues to have shortness of breathe, fatigue, cough and no stamina with activities. His most recent CT showed larger and more sarcoid. The plan...

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  • sarcoidosis without any symptom

    hi all, looking for help! my husband had a routine xray and chest showed abnormality...doctor thought its TB...but after all tests and bronchoscopy with biospy Tb has been ruled out. they now think it could be sarcoidosis....my husband has no symptom of the disease at all.... is there anyone without...

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  • Help for Stage 4 Sarcoidosis

    I need advice or help urgently. My mum has 4th stage sarcoidosis...diagnosed in 2012 and like a month ago, she started having these coughs at any part of the day and a white like foam ball comes out but she continues coughing. She has a nebulizer which she says, feels like it helps but...

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  • Recently I have been diagnosed with Pulmonary Sarcoidosis

     I find it very disheartening after learning I have Sarcoidosis that there is little to no information on this illness. I am 56 years old Woman and have most of the discribed symtoms I have read about; enlarger lymph nodes, severe tiredness, pain in my joints, sweats, weakness, coughing, and...

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  • Sarcoidosis/TB scare and other weird symptoms

    Hi- I was diagnosed w/sarcoid in early Dec. 2016. Went to doc because joints were swollen and could barely walk. I was also having high fevers/chills and severe headaches. Sent straight to ER and had a battery of tests then admitted. After ruling out multiple other diagnoses, I was told it was probably...

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  • Sarcoidosis Necrosis

    i have just been told I have this at the top of my spine one week ago. I have been on Prenisone IV for 3 treatments and 110 ML tabs per day for the next 4 weeks. The Lung doctor has told me zero except not to miss that 4 week appointment. Is this usual? The only question he asked was if i had kids....

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  • Stage 1 ~ 2 ~ 3 ~ 4 in sarcoidosis...what does this mean?

    I was diagnosed with sarcoidosis in 2004.  I had a biopsy of the lymph nodes and lungs and it was there and in a bad way.  I was told I was in stage 4 of sarcoidosis and all I thought was...omgosh! stage 4 that means it's bad like stage 4 cancer is.  Can anyone help me understand what...

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  • chronic pain from sarcoid - treatment

    Hi. My wife  Eve has chronic sarcoidosis in both lungs and  is  in bad to severe pain all day. She is frequently bent over in tears with the pain. Is this common with sarcoid? She can cope with the associated sarcoid problems but the pain is the mayor problem to her quality of life. She...

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  • off preds

    I have been off preds for about a month, its seems my body is trying to rebuild itself I have tight muscles, and muscle spasm, my back went out for 3 days. And I'm very sore when I wake up. I just wondering if any body else has gone through this?

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  • Vitamin B12 and sarcoidosis

    Hi there, I am off prenisolone a month now and feeling good. I was speaking to a client of mine and we were discussing vit b12. Has anyone heard anything about vit b12 deficiency and a link to sarcoidosis? Would love to hear views on it? Polly

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  • Sarcoidosis diagnosis

    Hi I have had a chesty cough and shortness of breath for a while now. After a chest xray showed enlarged lymph nodes, I was sent for a ct scan and I have just been diagnosed with Sarcoidosis. Could anybody shed any light on how serious this is or can be? My doctor wants to send me to a specialist to...

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  • My mother has sarcoidosis in lungs, what should she do?

    My mother, 62 yrs, has been suffering from sarcoidosis since last 5 yrs. She was responsing well to the inhaler given to her by her doctor, which she was supposed to take 2 times a day. Of late, during the tests, it was found out that the lung capacity has again gone down. But given her lung condition,...

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  • Kmc Kmc

    Tumeric

    Anyone using Tumeric with prednisone seeing results for sarcoidosis? Seems like we could research what we are all doing that is helping.

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  • husband diagnosed a year ago

    my husband was diagnosed with pulmonary sarcoidosis stage 1 last July. he presented with a wicked cough and was originally diagnosed with whooping cough. His PFTs were always 100%. he was treated with 50mg of prednisone initially by our GP because the pulmonologist was on vacation. when he got back...

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  • When coming off predisolone.

    So im wondering what your experiences of coming of predisolone? Abit of background. Diagnosedd with sarcoid in september 16 been on predisolone since then 40mg untill 2 months ago. Then specialist told me to goto 10mg maintenance dose as i was struggling with predisolone side effects. Cut down to...

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  • Methotrexate

    Hi, I been diagnosed with sarcoidosis in 1984. I been on prednisone off and on. Now the doctor wants to put me on methotrexate.

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  • I'm healed!

    Today, I am healed! On yesterday, God touched my body in away I can't explain. The only thing I can say is "Keep The Faith " and believe God is in control. I haven't touched my medicine in a week. I went home to Virginia with my husband and met Aposital Flowers who touched my body...

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  • More questions

    Hi. It's been a while since I posted here but here I am again with more questions. I was feeling better for a while but lately I've been having what feels like bee sting -but not as painful-  in my sides but mostly my right one above the waist and it's really scaring me since I have...

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  • Sarcoidosis

    Back in October of 2016, I got sick, and it seemed to go right to my lungs. My breathing has been labored ever since then, and I was fatigued all the time. My GP sent me for all kinds of heart test, etc., which of course came back normal.  I finally decided to take matters into my own hands, and...

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  • Granddaughter has Sarcoidosis in Kidneys

    My 8 yr old granddaughter has this terrible thing in her kidneys. It also affects her eyes. We were recently told that her kidneys are failing. I would love to speak with someone else who has a child that is suffering with this. I do know that she is a rare case. She is 1 of 36 nationally that is...

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  • Has anyone suffered

    Anyone have skin outbreaks such as in upper thigh creases like that? Husband took bactrim antibiotics for lungs and now has angry angry persistent painful splits. Anyone? Thanks

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  • Has anyone been prescribed methotrexate for sarcoidosis?

    I was diagnosed with lung sarcoidosis in January 2013 after tests including a bronchoscopy. I have been on prednisolone, omeprazole and alondronic acid for the last 2.5 years. Every time the steroid dose has bees reduced, theming function test has shown worse results. Due to the continued use of steroids...

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  • New Med Side effects

    Ok so I was doing HP Acthar gel (very similar to prednisone, but well tolerated), I still was getting worse in some parts but improved in others.  they main concern for me is sight....when I showed worsening in my blind eye they switched me to MTX and Humira.  I continued the Acthar, added...

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  • Sarcoidosis - not enough care and attention given to sufferers

    Hi, I've only just joined this forum but as a long term sufferer of Chronic Sarcoidosis I thought maybe I could say a few things on the matter. First of all I was shocked to read that one of the forum members had been told by his specialist that night sweats are not a symptom of sacoidosis. Nonsense!...

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  • Sarcoidosis diagnosed

    Hi there, thought I would post this to thank everyone on this site who have supported me and given invaluable advice when have been so worried. Finally got results yesterday, sarcoidosis definitely confirmed in lungs, biopsies on lymph glands came back clear, am getting an appointment with a sarcoidosis...

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  • Acute sarc. Bad knee's

    Hi, Iv recently purchased Knee support straps to help as my knees are really bad with the Acute Sacr. There not the slip on supports they strap around the knee and then hav extra straps for more support, their the only thing thats helping me walk at the moment but i was told not to wear them by a friend...

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