Sarcoidosis Research Project

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Hello everybody my name is Kevin and I am a respiratory therapy student doing a project on sarcoidosis. Part of my project requires me to interact with real patients to find out what the day to day struggles of this disease are like. My goal is to understand this disease better so I can provide better care as a respiratory therapist.  What needs do you now have that you didn't prior to being diagnosed and how has the healthcare system addressed those needs? Have all your needs been met? What are some ways you have coped with this disease?

Thank you in advance for any assistance you may provide me.   

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  • Posted

    Hi Kevin.

    I would be happy to help you. So far I have an empirical diagnosis of sarcoidosis. I'm waiting for a biopsy to confirm.

    In retrospect I have clearly had it chronically for years but just didn't know that all my disparate symptoms were linked. It has been identified now by an astute ophthalmologist following a massive flare. He started me on a course of oral prednisolone and has referred my to the respiratory team.

    My main difficulties are pain, extreme fatigue and loss of mobility due to breathing difficulty. I have good days and bad days.

    I am self employed so have been able to reduce my workload to cope but obviously that has had a major financial effect.

    My family has been really supportive.

    I have found that there is a lack of knowledge about sarcoidosis in the medical profession although my GP has been extremely kind and caring and is really going the extra mile to help me get the investigations I need.

    I have joined this group and also the Sarcoidosis UK group and have found them helpful.

    Is there anything else I can add to help you?

    Mairie

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    • Posted

      Thank you so much for the response. You mention a lack of knowledge, is it about something specific about the disease or is it just there is a lack of knowledge in general about sarcoidosis? Have you seen a respiratory therapist yet and have they suggested any treatments that you have found beneficial? 
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    • Posted

      Hi Marie. This site seems to jump all over the shop and l have replied to a few posts. I see RT Student has a name... Kevin... where did you get that from? (I had called him Robot in a previous post as l didn't know his name)

      I have major problems with my memory at present and my balance is getting worse too. I also get tired quickly and out of breath just climbing a set of stairs. I have never smoked cigarettes .but my father did and he died aged 56 with breathing difficulty and a heart condition. Also, i have 3 brothers that have died with chest conditions. The last two died of COPD (We burried my oldest brother last week)

      l saw my latest Neurosarcoid consultant (2nd) for the first time last Tuesday, on the way to the flight to Belfast for the funeral, and mentioned the death with COPD as the primary cause.

      My brother had stopped smoking 20+ years ago and was only 68 when he passed away.

      Interestingly, my consultant is asking in letters to other doctors l see, if the family link between my confirmed Sarcoidosis, and COPD has been fully investigated. IT HAS NOT!

      l have seen 3 Sarcoidosis Consultants and many registrars in chest clinics since this Sarcoidosis thing all started, it has occurred to me that my recently deceased brothers and l may share an inherited chest issue that came from my father's side of the family. This ball is still rolling...

      So, as you all can see that read this... check for genetic links in your investigations too.

      Another of my current issues is a disturbed sleep pattern. I am writing this at 3:30 in the morning having had 2 hours sleep and l will be awake for hours yet before being in a semi doze state for much of the day.

      This sleep depravation and Periphial Neuropathy are possibly caused by the steroid Predisolone. I have developed a dependency on this medication and nearly died of Renal failure before last Christmas when another consultant had me stop taking it. I had reduced the dosage by 1mg per week as directed, but it should have been 1mg PER MONTH.

      ADDITIONALLY this steroid iscosidered to have caused me to be borderline diabetic and requires regular blood tests to check for increases in sugar levels.

      Lastly tonight l will mention the drug Methotrexate. I was taking this medication for 4 months as a more aggressive way than Predisolone of combating Sarcoidosis in my lungs and unconfirmed Neurosarcoid in my brain.

      This drug takes 3 to 6 months to take full effect but the side effects come much quicker. It is taken once weekly with addotional Folic Acid inbetween the weekly dose. On taking Methotrexate each Monday eve l would go to bed with a bad headache and the bruising following the lightest scratch or blood sample was astounding!

      I had stopped taking Methotrexate in November as my GP was trying to get to the bottom of why l was suffering megrain like headaches. I will never take this medication again.l still bruise or bleed profusely from scratches and small cuts take ages to cure.

      I can supply my private email by request to anyone on here if anybody wants to ask any specific questions.

      Despite all of the above, l enjoy a good family life, with brilliant support. I currently have had colds for 3 months because of the medication also compromising my body's immune system. But l lead a good life with a positive attitude. After all...my blood group and motto is B Positive

      Kind regards to all

      David

      Note! (I always get copies of letters and keep my own files as information has regularly gone astray between different hospitals and departments)

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    • Posted

      My GP says I know more about sarcoidosis than he does.

      In July last year I started to have breathing difficulty and put it down to a dusty bale of hay. However, it has persisted since.

      In September I fell off my horse. I was in hospital for 3 weeks. I fractured 3 ribs and 6 vertebrae and had a collapsed lung and haemothorax. These injuries were disproportionate to the fall and in hindsight I think they were due to sarcoidosis.

      I had Xrays and CT scans which showed interstitial lung abnormalities and enlarged mediastinal nodes and oesophagus. I had an endoscopy to investigate this which excluded oesophagal cancer. Oesophagal biopsy was normal.

      The doctors in hospital were clearly a bit puzzled by the Xrays, CT scans and blood results but at no point did anyone consider sarcoidosis as a differential diagnosis. I think they were trying to connect the findings to the collapsed lung rather than thinking the other way round and considering that the abnormalities actually predated my accident.

      I also had a bad flare of the intermediate uveitis that I have had for 10 years. The ophthalmologist took one look and said 'This is sarcoidosis'. He joined up the dots regarding my breathing difficulty, chest imaging, joint and muscle pain and other symptoms. He started me on 40mg oral prednisolone tapering over the next 3 months. This has helped everything although I still have chest pain, liver pain, breathing difficulty on exertion and fatigue.

      He has referred me to the respiratory team and I am waiting for an appointment but have been told this will take a while. Because of this, I am opting to see a respiratory consultant privately. He has a special interest in sarcoidosis, so I am hoping for some answers.

      I will keep you posted!

      Mairie

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  • Posted

    Good afternoon Robot

    What are my needs 8 years into this?

    EDUCATION.... Sarcoidosis is not a well known condition in my experience. More medical professionals being aware would help.

    I was LUCKY a chain of events and people aligned to give me a confirmed diagnosis of Sarcoidosis in my lungs by biopsy by Dr Richards (now at Southampton General Hospital l think) and then the Doctors at Lusanne University Hospital following a second collapse in August 2014. They started my journey to be aware of Neurosarcoid... Dr John Wade at Wexham Park Hospital in Buckinghamshire, who suspected Neurosarcoid straight off but couldn't prove it, Professor Bronstein at Charring Cross Hospital in London, who was unable to find the solution to the inner ear/balance issue and he referred me to Jane Pritchard at Charring Cross as l had developed Periphial Neuropathy by this stage. She also referred me to Dr Robina Coaker at Hammersmith hospital to bring Sarcoidosis monitoring and care into one grouping of hospitals. And second from last is Dr Malik at Charring Cross for referring me via my GP (Dr Patel - brilliant guy at Denham Medical Centre) to Dr Desmond Kidd at the Royal Free Hospital... l feel at long last l am going to get the answers l need.

    Is that enough for starters Robot?

    Kind regards

    David

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  • Posted

    Good afternoon Robot

    What are my needs 8 years into this?

    EDUCATION.... Sarcoidosis is not a well known condition in my experience. More medical professionals being aware would help.

    I was LUCKY a chain of events and people aligned to give me a confirmed diagnosis of Sarcoidosis in my lungs by biopsy by Dr Richards (now at Southampton General Hospital l think) and then the Doctors at Lusanne University Hospital following a second collapse in August 2014. They started my journey to be aware of Neurosarcoid... Dr John Wade at Wexham Park Hospital in Buckinghamshire, who suspected Neurosarcoid straight off but couldn't prove it, Professor Bronstein at Charring Cross Hospital in London, who was unable to find the solution to the inner ear/balance issue and he referred me to Jane Pritchard at Charring Cross as l had developed Periphial Neuropathy by this stage. She also referred me to Dr Robina Coaker at Hammersmith hospital to bring Sarcoidosis monitoring and care into one grouping of hospitals. And second from last is Dr Malik at Charring Cross for referring me via my GP (Dr Patel - brilliant guy at Denham Medical Centre) to Dr Desmond Kidd at the Royal Free Hospital... l feel at long last l am going to get the answers l need.

    Is that enough for starters Robot?

    Kind regards

    David

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