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sarcoidosis

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juliy0127
juliy0127

Hi Im 49 and have been diagnosed with Sarcoidosis, after thinking it was Lung Cancer.  I had two ct scans an MRI and bronchoscopy and they found that the lymph nodes within the lungs are infected causing me chest pain and breathlessness.  My consultant is just fantastic and tested my lung function.  I was found to be mising beats per minute when sleeping and he gave me a C-PAP machine which has allieveated that tiredness and the night sweats to a certain extent.  The only maon is joint pain   has anyone had the same kind of symptoms as me xx

1 like, 22 replies

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  • Nickademus
    Nickademus juliy0127

    Posted

    Hi I was diagnosed when I was 40. I wanted to go to Las Vegas but got Sarcoid instead! I was taken into infectious diseases with Cellulitis in both legs. Apparently when you have a lung condition it reflects in the legs or so I was told. It developed into Streptacoccus, erethyma Nodosum and Pannicculits. On entry to hospital I had a chest xray as standard. The consultant initally diagnosed athletes foot, even though both legs were huge, red and purple and covered in lumps. I was placed in isolation as they diagnosed TB. Things slowly got worse and my liver and kidneys began to fail. Then I had my 2nd drug reaction. The Lung Specialist came to see me and said it was one of three things: TB, Sarcoidosis or Lymphoma. More tests, CT scans, MRI, Bronchoscopy, EBOS and Ultrasounds, it was diagnosed as Sarcoid. I have lung function every time I go to hospital. About a month after coming out of hospital I told my consultant at my sleeping pattern as I was sleeping 18 hours a day and couldnt funtion and she diagnosed OSA which I was tested for and I stop breathing about 20+ times an hour. I need 16/20 cubic pressure from my CPAP. Ive had the CPAP for 18 months and I cant sleep now without it. Its the only way I can function and live a normal working life.Its better with the water vapour tank and I changed masks as it marked my face. A right passion killer isnt it ! I still get tired and when enough is enough I just have to stop as there is no energy reserves. I still get night sweats but im not drowning in them like they were. The infections have damaged my legs, I have sarcoid spots on them too which are ugly but when my Sarcoid flares or is starting to the spots swell become harder and redder, sometimes they are purple and sometimes they go a grey tone. Joint pain is in every joint from the moment I wake I often feel 92 not 42. But hey ho, I didnt die, they didnt amputate my legs and life is for living. Today has been a better day, I may regret saying that tomorrow when I feel like death warmed up
  • Nickademus
    Nickademus juliy0127

    Posted

    Forgot to add that I wasnt absorbing oxygen properly and they were unsure why. Last year I was absorbing 60% and a year on 72% so I have lung functions periodically. I had one at Christmas and my next one is in March. I have to come off my Prednisilone at least a month before so they can make an accurate measurement of whats going on. Im gearing myself up for the drug withdrawl and my bear with a sore head routine!!!!
    • magdafloasiu
      magdafloasiu Nickademus

      Posted

      Hi Nickademus and Juliy,

      so sorry to hear about your condition. Sarcoidosis is a known trigger for erythema nodosum (those red bumps you have on legs). I also had them, but it only was a one-time episode. Additionally, sarcoidosis can damage lungs seriously, which means that your lungs will never function again as they should. However, lungs are amazing organs, and they can regain some of their functions in time.

      Back in 2009, I couldn't breathe not even 5 min without oxygen; I had been in the hospital for three months due to sarcoidosis, lung infection and a terrible pneumothorax, on oxygen level 10. Slowly, the infection was resolved with antibiotics, and after one year I was able to stay without oxygen. Also, my oxygen levels in blood were very low, between 40-50%; I was also feeling sleepy all the time and unable to think clearly. Over time, my condition improved, and the oxygen level in blood rose up to 70-80%. Though oxygen levels in blood are around 80% now, they drop about 10% whenever I have a falre-up. That's because lung tissue becomes inflamed, affecting lung alveoli so that gas exchange (oxygen and carbon dioxide) is not done properly. Additionally, doctors don't know too many things about sarcoidosis and sarcoidosis complications. When I was in the hospital, they told me that I'll never be able to stay without oxygen and that I need lung transplantation. But they were wrong, as I can stay without oxygen (i use it only when I'm doing things around my house) and if my condition doesn't worsen, I will never have lung transplantation.

      So, my point is that you should never lose hope. Human body is amazing, it has resources doctors don't know about. In my opinion, if sarcoidsis is kept well under control, lungs can recover.

      regarding your sleeping problems, I guess you suffer from sleep apnea; in my opinion, you should check with your doctor to see if surgery is not an option. Though surgery is seen as a last resort treatment, it can help you live a normal life, at least as much as possible, again. I guess that sleeping with the mask and that machine on isn't a pleasure. i know that because I saw people in the hospital sleeping with CPAP...You can find many details about this condition, including treatments and surgery on Mayo Clinic site. Anyways, I'm not a specialist. I'm just saying that this is what I would do; surgery is one option I would definitely consider, especially taking into account the benefits.

      Regarding joint pain, some people with sarcoidosis develop join paint. I didn't. If you browse this forum, you will find some posts regarding joint pain due to sarcoidosis, Juliy.

      All the best,

      Magda

    • Nickademus
      Nickademus magdafloasiu

      Posted

      Thanks  for your comments. Yes I have Obstructive Sleep Anpea and its been brought on by weight gain through steroids. I naturally have a short neck. My consultant explained how this combination will always cause OSA. Im in the UK so there isnt a hope the NHS would even consider surgery and let alone with Sarcoid. Its catch 22. I'd lose weight without steroids, I'd lose weight with more vigorous exercise but breathing and joint painmake it so hard. But such is life. Im not complaining
  • earthia
    earthia juliy0127

    Posted

    Hi Jully, I think we all have an array of aches and pains, my joint pains go way back to when I was a child, and I have never grown out of them. They get worse, then seems to improve, along with lack of flexibility and weakness, but my most debilitating is the coughing and if I can keep that at bay them life is ok.

    Ten years ago I was walking with sticks, very slowly and very painfully, now I can spend a couple of hours at a time gardening, even play a very short and gentle game of badmington once a week, which 10 years ago was unthinkable. Even getting in or out of a chair was difficult, so you can imagine how wonderful life seems with so much mobility and I am 60 now. So things can and do improve. I believe our food is our greatest friend and medicine so drink lots of fresh vegetable juice, and along with that a stress less life. Mediatation may help. I also keep away from anything which will irritate my chest, so we use only vegetable paints in the house, I always wear a mask when vacuuming the house and wash the vacuum filter every day. I dont go to large functions where people will be spreading colds etc.I also have a very sparse bedroom, special mattress, no soft furnishing, no where for dust or mould to lurk. We need to take care of ourselves as much as possible with this illness

    Good luck for your future.

    • GailNCUSA
      GailNCUSA earthia

      Posted

      Your posting is two years ago so I'm hoping you still follow this forum. I was diagnosed with sarcoidosis 2-1/2 years ago. I have had a cough ever since. I'm wondering if you found a way to control the coughing. Sometimes I get a break that could range from few minutes to a few months at a time. I'm on Predisone but that doesn't keep the cough away. At times the coughing is violent in nature or I feel like I can't catch my breath ( that passes rapidly thank the Lord). I have cracked a rib already.

      I do use a nebulizer 2x per day which helps open the airways. And keeping my head low helps at times. I've even taken to watching TV hanging over a chair to stop. The only complete break I get is when sleeping.

      I'm hoping you or someone else may have any advice that may work.

      Thanks

    • magdafloasiu
      magdafloasiu GailNCUSA

      Posted

      Hi GailNCUSA,

      Sarcoidosis can cause two types of coughs: dry cough and productive cough, which produces mucus. Because the lungs don't work properly, they can't eliminate the mucus, which keeps on causing the irritating cough. Therefore, if you have productive cough, an effective medicine I took is Acetylcysteine, which dissolves the mucus, helping your lungs to get it out. My doctor told me to take the highest dose of this med (600mg/day) for one month. It helped me a lot, as the cough stopped. Whenever it returns, I take the med again, and it goes away. If you have dry cough, I've heard from other sarcoidosis patients that the best remedies are the herbal ones. You can find them as tablets as well. over here, we have a local brand and I'm sure you have one in your area too. Also, you can talk to your doctor, who may prescribe something. Or even better, talk to your pharmacist, tell him/her about your condition. Sometimes, pharmacists are able to recommend some medicines doctors don't think about.

      All the best,

      Magda

    • GailNCUSA
      GailNCUSA magdafloasiu

      Posted

      Hi Magda

      Thank you, thank you, thank you. I am so happy I found this site. I actually cried when I read your response. I have been trying to find something that works for over two years. I hope my doctor agrees and gives me the prescription. I have dry and productive coughing it alternates. Recently I have been using homeopathic liquids to help with the cough as well as chest tightness, calming of the lungs and they do work. But don't last very long so I end up taking them frequently.

      I see my pulmonary doctor next month & will definitely discuss this medication.

      May I ask how long you have had sarcoidosis and where are you located?

      Thank you so much for the info

      Gail

    • magdafloasiu
      magdafloasiu GailNCUSA

      Posted

      Hi Gail,

      you're a sweetie! I'm happy I was able to help (and I hope the medicine will work). In my country I can get it without prescription. Actually, I just checked my notes and my doctor gave me double dose (2 x 600mg of the medicine I mentioned above per day) for about 10 days, and then 1 dose (1 x 600 mg a day) for 20 more days. She also explained that in my case (I also have pulmonary fibrosis because of the sarcoidosis), the lungs cannot work to get the mucus out. The sputum acumulates and becomes very thick and, at times, impossible to expectorate without help (obviously, the "help" is the drug I mentioned above, which disolves the mucus). Before I also used to have dry cough but only because I wasn't able to expectorate the thick mucus, which continued to accumulate inside my lungs. Once I got all the mucus out, I was able to breathe much, much better. 

      I was diagnosed about 2-3 (or 4??) years ago, but I've been having problems for the past 10 years (doctors thought first that it was idiopathic fibrosis; it was actually sarcoidosis). If your doctor doesn't want to prescribe this med to you, make sure you ask him/her why. She might have a good reason (who knows?!) not to give it to you. If the drug isn't available in your country, ask your doctor or pharmacist to give you something that dissolves the mucus. There are plenty of drugs that can do this. You can also find some herbal remedies for this, but they do't work that fast.

      And yes, I'm from Romania.

      Please let me know how it goes... Good luck and all the best! smile

      Magda

    • GailNCUSA
      GailNCUSA magdafloasiu

      Posted

      Hi Magda,

      Thanks again for all the info. I looked up the drug & from what I read you can get it in the US with prescription. Just not sure how available it will be. But definitely will work on my doctor. I use 3 Hp liquids - one that promotes healthy lungs & easy breathing; one relieves bronchospasms & tight chest plus opens airway; one that reduces phlegm, mucus & throat congestion. They all work great but not long lasting.

      I will let you know what my doctor says. It will be a few months before I have an answer re the drug as I don't see him until end of July.

      I really appreciate your fast responses.

      Gail

    • monica62597
      monica62597 GailNCUSA

      Posted

      Get a good lung specialist!My husband is on methyltrexate after steroids didn't control cough

  • linda39
    linda39 juliy0127

    Posted

    Hi and welcome, there appears to be several threads/pages/forums for Sarcoud now

    so you may find some answeres on the others

    The start of your post is like a carbon copy of me.

    I still have regular lung function tests, but thye seem quite stable at present

    My original sarcoid started with joint pain, then all the other symptons started

    Intially it was a rheumatologist that got the ball rolling for me.

    Hope this helps

  • louisa21514
    louisa21514 juliy0127

    Posted

    Hi

    My name is Louisa and I have just been diagnosed with the same thing.  I have had a lot of problems with my eyes.  I too suffer with joint pain amongest other things.  My hip joints have just settled down on their own which is wonderful, be be able to move around a lot better is great.  I have had to start steriod treatment at a high level to take the swelling down from my optic nerve. I have found that my finger joints are now starting to settle.  I also suffer with a lot of chest discomfort which I have had from the start.  I feel like I have a big fat rubber band pulling me in all the time at the bottom of my ribs. Some times if a sit or lay in a particular position all the pain goes away and it is such a good feeling until you move and it all comes back. I see all this as signs of things getting better as I have been over the past few months very unwell with it.

    I hope this help.

    T-Coy

    (Take care of yourself)

  • tangles
    tangles juliy0127

    Posted

    Juliy and Nickademus

    Great posts by both of you!

    When I first had my health problems back around 1984.

    They believed that I had Asbestosis. Asbestos in the lungs...a death sentence.

    Later to find out it was Sarcoidosis. Symptoms similar to all of us. Chest pains, trouble breathing. Low gas exchange e.g. oxygen and low volume in total. The doctors and techs were all preparing me for death. Now over 30 years later I have proven them all wrong. However it has been a very long road.

    Present lung function test says lung volume normal (first time in 30 years) oxy 97

    % and I have lost 10kgs through a lot of hard work and diet over the last three months.

    Your doctors sound a lot smarter than mine in regards to sarcoid.

    Only found to have sleep apnea 12 months ago and only because I insisted on test being done. Stopped breathing 44 times and hour on average. They say 30 times is server. Side effect of CPAP machine is I believe in my opinion allowed my lung volume to return to normal, first time in 30 years. So there may be benefits to the CPAP in your life. This is my opinion only, to suggest that to my doctors would be above their ability in relation to their knowledge of sarcoid. Your doctor’s sound much more "switched on".

    The increase lung volume has allowed me to exercise more (long 60mins vigorous walks) this has helped with weight problems and in turn helped with joint pains as there is 10kgs less of me for my body to carry around.

    Whilst steroids seem to stop the white blood cells from being over active and stopping further damage to our organs. I believe with good medical evidence to support me, that the granuloma produced by the body continue to be made by our defense system. In 2008 I had a hip biopsy done which shoed granuloma in my marrow. This means that my body is still making it and as such is causing joint pain. Not only in my knees but every joint in my body. To try and combat that I take daily Glucosamine and Krill Oil tabs and caps.

    After saying all of this please note I am not a doctor nor do I have any medical qualifications. My comments have been based on decades of being a sarcoid suffer who will not accept all that is told to him but will go out independently to find answer to questions the doctors find not important enough for them to peruse.

    Hope my comments might help in some small way.

    Regards

    ​Tangles

    • Nickademus
      Nickademus tangles

      Posted

      Hi Tangles

      Yes it does help knowing other people struggle in the same way. I dont mean that to be unkind in anyway, I hope you get my point. Yes my Consultant is extremely switched on but has been head hunted to another top Hospital, but the last one I saw was equally switched on. I appreciate youre not a Dr, but as my last consultant said to me I know my body and my Sarcoid far better than they do. If the Glucosomine and the Krill work for you then why not take them. Im going to give them a try for definite.

      My father has asbestosis and I can see why the symptoms are similar, but that is a horrendous condition to watch someone deteriorate. Its important to note these two conditions are not related, Ive replied to your post as Im weaning myself off Prednisolone starting yesterday. I have spent 15 hours asleep yesterday and had to have a snooze this afternoon. Even with my CPAP on! My down sides of it that it marks my face on occasions and of it 'leaks' in the night it always shoots me in the eye. Not funny at 3am !!!

      Congratulations on the weight loss I get how hard it is. Im hoping as my body adjusts to the lack of steroid I will start to lose the lumps of blubber that make me feel deformed. My aim is to fee 'normal' again. If there is such a thing..........

    • magdafloasiu
      magdafloasiu Nickademus

      Posted

      Hi Nickademus, there was a time when I also thought that I'll feel "normal" again. Sorry to disapoint, but once sarcoidosis affects someon's body so seriously, there is no turning back. Yes, sarcoidosis can go dormant, but the organs that it has irreversibly affected will never function properly again.

      I also asked my doctor if I'll ever breathe again properly. She told me that my lung capacity will remain low no matter what I do - maybe, I'll feel better for short periods of time, but I'll never feel like "new" again smile. I even tried to exercise to increase my lung capacity, but I wasn't able to do it for too long, as I started to feel very, very tired. A few years ago, sarcoidosis did went dormant and I felt better, breathed better; even my lung tests (including capacity) improved slightly. But once sarcoidosis became active, all the symptoms were back, and the lung capacity decreased more than before. So, I guess, we can only hope and pray...

    • linda39
      linda39 magdafloasiu

      Posted

      Hi, they frst told me it was a 3 year disease and would not be in remission for 10 years, i think once you have it we will always be prone to the effects of it.
    • GailNCUSA
      GailNCUSA tangles

      Posted

      It was comforting to read your posting. I'm thinking there is a chance I can recover enough to go back to enjoying my retirement & traveling with the hubby.
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