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I'm a respiratory therapy student trying to better understand Sarcoidosis & relate to individuals:

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Hello, my name is Lindsey. I am a respiratory therapy student. I would like to better understand Sarcoidosis, as well as educate myself on what individuals with Sarcoidosis need.

What types of things would you like me, as a future healthcare provider, to know about your personal needs, as well as the needs of your family?

How do you cope with this?

Is there anything that you personally feel healthcare providers are lacking in when dealing with Sarcoidosis?

Also, if there is anything that you would care to share with me that may help me to better understand. 

Thank you very much for helping me to better understand and relate!

1 like, 27 replies

27 Replies

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  • camey03589
    camey03589 Guest

    Posted

    Hello, I would love to help you more, however I have disseminated sarcoidosis, however there seems to be no signs it was ever in my lungs.

    So from that perspective I m not of much help, but from someone living with sarcoidosis, I think I can say for all understanding this degenerative and debilitating disease ALL physicians should know the basics of it and take it more seriously. I recall the day of exploration surgery to remove my spleen because they thought I had lymphoma and felt relief, it is a long suffering disease that affects every aspect of your life. A few may find remission but the ones that don’t, like myself going on 9 years find medical personnel on the internet minimize the conditions and severity of biologic treatment and their affects. I hope this helps you.

    • Guest
      Guest camey03589

      Posted

      Camey03589,

      Thank you for your response. Do some people actually go into remission? I was under the impression that some do , as you previously stated above; however, another person told me that individuals do not actually go into remission, but that they may simply not be experiencing as severe "flare ups."

      Lindsey

  • peter52775
    peter52775 Guest

    Posted

    Hi Lindsey, first let me say a massive thank you, I'v yet yet to find or even hear of any doc actually wanting to learn more about this horrible disease,

    I'v been refered to the Royal Brompton hospital in London once , don't get me wrong they are very profesional and knowledgeable but they are only treating people who have neuro or cardiac involvement, anyone else is usually discharged back to their own gp or other specialist, thats where most of us sarcoid sufferers get problems, not many docs or even specialist docs don't know anything about it. My doc sent me to a bowel doc who didn't even examine me, he read my notes and said rubbish You only get sarcoidosis once and then it goes away.... No it doesn't it's for life it cannot be cured, some people only get it mildly but many suffer with it for years, some say it behaves like cancer because it can attack any organ or part Of The body oh yes, that so called gastric surgeon isn't at my hospital anymore ,I don't know if he left or was fired I'm just glad he's gone

    • Guest
      Guest peter52775

      Posted

      Peter52775,

      Your feedback is appreciated. One thing that I have been hearing mixed feedback on is regarding whether individuals can go into remission, or whether they are just not experiencing as severe flare-ups. So, those who have Sarcoidosis do not in fact go into remission? I am sorry to hear about your experience with the physician. An individual will always know their own body best! Also, are there any specific needs that family members caring for loved one with Sarcoidosis may have, as well as the individuals themselves? 

      Thank you for being patient and answering my questions. I really want to make sure that I properly understand.

      Lindsey

    • peter52775
      peter52775 Guest

      Posted

      Hi again Lindsey, I think more could be done for family and friends of patients with sarcoidosis is more information and clarity without all the confusing medical terms, my neurologist often baffles me with his technical rambling,

      My brother also has sarcoidosis but his never flared up again after being found in his lungs,

      Our doc told us both that Sarcoidosis wouldn't kill us, it just suppresses our immune system and we would be open to more bugs and germs,

      I know more information about Sarcoidosis from the internet and forums like this one than any doc has told me, my neurologist in Sheffield recently threw a spanner in the works by saying I could have FND as well but thats pending more tests

    • tyagi
      tyagi peter52775

      Posted

      If your doctor told you that Sarcoidosis would just suppress your immune system, then he/she really knows nothing about the disease.  It's actually an OVER-reaction of your immune system, producing granulomatous tissue. I hope you put them right!

    • camey03589
      camey03589 tyagi

      Posted

      Good call please don’t let people that don’t know about your disease get it wrong. Just like if you are taking Remicade it is a chemo treatment your infusion nurse will argue that point look it up and educate them if they aren’t educating themselves.
    • peter52775
      peter52775 tyagi

      Posted

      That was a few years ago now and he's been retired since, but I'm sorry to say that this level of ignorance is still common today, Even on a stroke ward in rotherham ,,,,,,OMG. Did I just say that,,, oops,

      The head stroke nurse actually said he'd never heard of it. It was there when I was first seen by my neurologist who is,,, well ,,, let's just say not much better,

      I can say however I have a fantastic chest and resporatory consultant who is always willing to listen to me and my family, without him I'd really be up the creek without a paddle

    • camey03589
      camey03589 peter52775

      Posted

      I still get that everyday from someone. I have been to Mayo Clinic, they were the only ones that acknowledged how serious this was. My primary Doctor is a rheumatologist he is the point of contact for everyone. You would think that more people would know about it. When you personally know a person that is living with sarcoidosis other than on this forum. Something needs to change.
  • tyagi
    tyagi Guest

    Posted

    Hi Lindsey. Thank you for your interest in Sarcoidosis. The biggest problem is that Sarc is a multi-organ disease. Mine started with a skin lesion 30 years ago. Into remission but it still pops up when the Sarc is bad. 10 years later it was in my lungs and eventually diagnosed with a biopsy. High dose steroids pushed it into remission but it still flares up - winter doesn't help. The excellent respiratory clinic in Sheffield deals well with lung symptoms but know only some of the other problems such as visual symptoms , fatigue, sweats and joint pains. These are documented but nobody seems to have an overview or is able to liaise with other departments. Maybe you could help in this area? Good luck with your research. Tyagi

    • camey03589
      camey03589 tyagi

      Posted

      Mine started out the same way with a lesion on my finger. Didn’t realize that’s what it was, then 20 years later! Bam! It’s Everywhere! No remission in 7 years. We must go on even when we don’t feel there is any place to turn for answers.
  • camey03589
    camey03589 Guest

    Posted

    Lindsey thanks for your interest as you can see this is way beyond a simple solution but every educator helps spread the need. Thank you!
  • david03145
    david03145 Guest

    Posted

    Goodness me folks, l did not realise this was such a difficult subject for some.

    My story is... I had an agrivated and persistent cough that went on for months. My GP eventually sent me for x-ray and a very sharp cookie spotted slight scarring in my lungs. I was referred to a pulmatory consultant (private) who confirmed by biopsy it was Sarcoidosis. I had an inhaler which cleared the coughing, but it would flare up again each autumn/winter. My condition was monitored 3 monthly with full pulmatory checks. I had lost about 15% breathing capacity by the stage my consultant eventually recommended Steroids. This, in retrospect was not a good day... and l agreed. I have since developed a steroid dependancy, and periphial neuropathy in my hands and feet..... Not pleasant I can tell you. Additionally, 3.5 years ago l collapsed with what was initially described as a major Labrinthitus event (since thought unlkely by various specialities) and ended up in a Swiss hospital having CAT. MRI & ECG tests & with many blood tests. The Swiss team also carried out a lumber puncture to reveal a raised level of CSF proteen. Analysis of head MRI scans revealed a suspect inflamation of left eye tract and i was discharged on a large dose of steroids. On return to UK l had investigations carried out by Eye specialists... who referred me to a Neurologist with nothing untoward found. I was seen by a doctor who suspected l had Neurosarcoid... but was unable to prove it. He eventually referred me into an ENT specialist in London, and after numerous investigations l was reassigned to a Neurological team, and am being treated for Neurosarcoid. I have had a severe balance issue since the initial collapse, and changes in dosage of steroids revealed Osteoarthritis to add to the list of issues. I recently started Methotrexate in tablet form and combined with a reduction/stop of steroid l came close to renal failure and had to go back on steroids. My immune system is compromised to being non existent and l have had a torid time this winter with colds and viruses. I am now on my third batch of Anti-biotics to try keep me alive and out of hospital.

    I think it depends which doctors you have looking into your issues what your level of care will be. The unfortunate thing is that different medical specialities fail to communicate effectively between each other, and if treatments are across different health authorities..duplication of effort and administration blunders are the norm.

    The above is the condensed version.l wish you well in your research.

    • peter52775
      peter52775 david03145

      Posted

      Welcome to the Sarcoidosis club, it really sounds like you've been through the ringer more than once.

      Many of us on here will relate to your feeling of being passed from pillar to post, it's beyond a joke that we are bounced between doctors and even health authoritys, I myself have treatment at Sheffield, rotherham, Doncaster, Barnsley health authoritys oh and the Royal Brompton hospital in London aswell, it sucks big time. I'll write more later, I'm starting a viscous headache and it can last for weeks

    • camey03589
      camey03589 peter52775

      Posted

      I’m sorry to here about your issues with your care primarily and with communication for sure. However, this brought something to my attention, I am in the US. Do you think this has anything to do with funding or socialized medicine? Do you have an option for private health care? Could you come to the states for treatment? Is that at all possible? If you had a sponsor of some sort? I agree I struggle with communication and the disease is relentless but I feel my treatment is the best it can be right now. Anyone’s thoughts maybe collectively we could start a program to host individual’s seeking treatment in different countries?
    • camey03589
      camey03589 david03145

      Posted

      David your story is remarkable, please read my post to Peter maybe there is a way to network amongst ourselves with the Dr’s that do know what’s going on to get the best care for the symptoms and in the process find a worthy advocate, to combine and confirm our info for a worthy establishment I. E in the states I would recommend Mayo and Cleveland Clinic in the UK you might know best. In addition, maybe having the compassion for one another we share over our day to Day suffer may we can form an alliance to sponsor each other if care is available in another country. There are people utilizing go fund me for way less worthy causes. Thoughts? Please be kind, I’m a loving caring person and I have and do suffer, so does my family, I’m just looking for ways we can build strength in numbers. 
    • tyagi
      tyagi camey03589

      Posted

      Hi , Camey. I dont think that funding is an issue here. Our care is free at the point of use and I (like most of us in the UK and Europe) couldn't afford private or US costs. The problem is that different specialists seem to know only about their own area ( lung, skin, kidneys etc.) and nobody seems to have an overview. Most care seems to come from the pulmonary sector. We need, as you say, to organise as patients to get these specialists talking together!

    • david03145
      david03145 peter52775

      Posted

      Good evening Peter.

      My experience of the whole Sarcoidosis/Neurosarcoid issue is that unless we get in front of the right doctor then the journey can be long winded and goes round in circles with duplication of effort. And unless you are proactive and have the support of a good GP then you may never get the answers.

      My appointment letter arrived today for the Neurosarcoid Unit at The Royal Free Hospital, This unit is actively carrying out research and it has taken me 6 months to get this far. I dont know if this unit will get me better treatment, but after having a pretty horrid first experience of Methotrexate... l am happy to have an open mind. I don't have many choices to be honest...but it must be better being seen by a team of doctors that specialise in Neurosarcoid... than just one doc that has a 8 month waiting list between appointments. So it remains to be seen what will transpire.

      Good luck with your illness.

      Kind regards

      David

    • david03145
      david03145 camey03589

      Posted

      Good evening Camey. Care in the UK is not universally the same across the region's. I am fortunate to live not far from London. This opens up numerous medical specialities because of the sheer scale of hospital provision across the city. I have been seeing some utterly brilliant doctors and am about to see another one that carries out research into Neurosarcoid.

      I am not sure that l would have got better care if going through a private / insurance led route. I had private treatment initially

      , but on changing job, the new healthcare insurers refused to cover previous or undiagnosed conditions.

      I am confident the direction of travel is forward and there is no restriction on funding for investigations or treatment. This is possible because collectively, all tax payers pay into the National Health Service... but not everyone will require the level of care that l require.

      I hope this makes my ace in all of this clearer.

      Kind regards

      David.

    • camey03589
      camey03589 tyagi

      Posted

      Thank you for filling me in. I personally am disabled from this disease I have Medicare which is $140 something a month but only covers 80% and the rest is yours. My husband and son are not eligible for that coverage as it’s only for disabled or retired social security system I don’t know how that compares? But we pay $900 per month for my husband, my son and me to have secondary coverage and still we pay $10k to $20k in medical expenses per year. It’s ridiculous! However, is there not research hospitals like Mayo Clinic or John Hopkins that have a more wide spread knowledge other than pulmonary? I would have been dead already if that had of been the case. So any ideas on how to accomplish this task this disease is killing people all over the world it should be getting more attention than it is.
    • camey03589
      camey03589 david03145

      Posted

      David I apologize disregard my questions regarding your location. This answered it. What is the possibility of an American getting into that hospital if you get results? Or I hope you can share my Dr.  is Veronica open to suggestions. I hope you get good news, I am able to take methotrexate but it’s very hard on my kidneys I can’t consistantly take it without kidney shutdown. I’m hoping for positive helpful news for you my new friend please share what you learn. In the US it seems rheumatologists seem to be taking more of an interest to seek out overal treatment than anyone I’ve found. I just know there has to be something we can do to draw more attention to this devastating disease if we stick together.
    • david03145
      david03145 camey03589

      Posted

      With regard to an American getting treatment in the UK... l would think this is possible and you can check with your healthcare provider or insurance company. I am about to see Dr Desmond Kidd at the Royal Free Hospital in London, and he does have private clinics too. The NHS would be obliged to charge you for any care provided in the UK as you have a pre-condition. But often this does not happen. But the private route might be a better option to look at, if you travelled to London for the care. I doubt your healthcare provider would pay for this though.

      Lucky for me, my care of the initial symptoms in Switzerland... was covered by a reciprocal agreement we have in Europe... and l only paid 100 Euros ($90) for medication received on discharge.

      I believe the cost to the UK for my treatment over 4 days in Switzerland would have exceeded $10,000 because of the complex testing in their emergency department (headed up by a British doctor) was funded/reimbursed by our NHS.

      So l am grateful for that cover being available.

      You should not need to come to Europe/UK as your best option is to do as much locally as you can.

      Travelling is now very tiring for me and travelling to the US would not be something l would explore as it is probably fair to say l can obtain good healthcare at home free of any extra costs.

      Something l would say though is... l have funded privately a lot of sports massage and acupuncture. Again l an fortunate in that l have the same people that carry out these procedures to the British Olympic Rowing Team and not only do l get relief from pain as a result..... these are both good for general wellbeing.

      Again, l hope this provides a better picture of where l am with my issues.

      Kind regards

      David.

    • camey03589
      camey03589 david03145

      Posted

      You know your stuff! Your story and treatment seem very similar to mine. I also partake in massage (except it’s painful) and acupuncture, he’s retired Andy comes to my home. Four days at the Mayo Clinic in Rochester Minnesota was $250,000k my out of pocket was $60k my 1st year from September on. Clearly our medical system is broken. Endocrinologist confirmed today nodules on my thyroid. Not sure what that will do, will recheck in 6 weeks for changes. Travel exhausts me as well. We are purchasing a motor home instead of 5th wheel so I can rest and be with my husband when he goes on tour with Western Sonrise Ministries Gospel Group. I too am fortunate but makes me more cognizant of the ones that aren’t in our position. It’s a tough row to hoe as we say in Texas, but not having money, or having to be sick and work or not affording medication and being alone, brings me to my knees, I would not wish this disease on anyone. 

      Kind regards as well.

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