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Diagnosed 2001 but no follow up with on going problems

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Squarky
Squarky

After coming out with lumps under my skin arms legs hands and a rash on both shins and also black in my tattoos swelling up I went to hospital and had  a lump taking out of my wrist which was confirmed as skin sarcoid also I was told it is very rare to have all 3 symptoms lumps rash tattoo swelling,I was given a course of tablets over a few weeks but had to keep having my thyroid checked ,my problem is now is that I keep bringing lumps of phlegm up and at stages it is hard to breath unless I am on prednisolone which help a lot.my doctor keeps telling me he will look into sarcoid as it never goes away once diagnosed,I went to ENT and had a sore sticky eye and very dry throat but was being checked for a nasal problem and the doctor asked if sarcoid had ever been mentioned in the past???.........frustration is not the word!!!

0 likes, 27 replies

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  • gustav
    gustav Squarky

    Posted

    I can imagine your frustration. It's about time your doctor stopped "looking into" things and got on with giving you a definite diagnosis. I wish you well.
    • Squarky
      Squarky gustav

      Posted

      Cheers I am deffo up for this from Monday because the way I was fobbed off wed/thur shocked me a bit.......
  • frustrated61
    frustrated61 Squarky

    Posted

    Hi Squarky

    I'm sorry you're having such a hard time with your sarcoidosis.  I was DX'd 10 years ago and for most, it does go away.  Sarcoidosis is one of those quiet things everyone carries in their DNA...some never have problems and some who do have issues, it does go away ...just for instance, one might go to the doctor because of coughing, breathing is hard and they are diagnosed (DX'd) with pneumonia...they are treated for that and afterwards life goes on.  Unbeknownst to them, they quite possibly did have a bout (little) with sarcoidosis. It's gone and they never knew they even were touched with it and they never will again. However, there are some who have it for 5 years and under.. being treated with prednisone for a while,they no longer have any symptoms and their life goes on business as usual.  The phlegm you're coughing up most likely should be addressed by a rheumatologist as they deal with inflammation (ie, phlegm).  Your doctor will be surprised how much you know....and most likely you'll know more than him if you stick with this forum because there is a wealth of knowledge that pops in and out of here.  "If you post it, they will come" lol field of dreams...

    Then there are those (myself and sounds like you also) who are symptomatic even when on prednisone and it doesn't go away.  Perhaps it may be our immune system just isn't like those who can fight it and it goes away. 

    I know I suffer from two autoimmune diseases...sarcoidosis and sjorgens ...I see a pulmanologist, rheumatologist and a cardiologist for the sarcoid and for the sjorgens, I see a cornea specialist and and another specialist who I see for the prose lenses and an ENT specialist...all I see is the word "specialist" and it sounds like money to me lol  Each treat the symptoms however, the rheumatologist is of great importance as with any auto immune disease, we are dealing with inflammation...and the rheumatologist treats that with other meds along with prednisone.  I'm only telling you what doctors I see so if you are getting more and more frustrated, maybe you can just make your own appointments!  lol  I was on prednisone for over two years and then off and on thereafter.  In addition to the prednisone, I take methotrexate and plaqunil.  Both are cancer fighting medications but also cover sarcoidosis and sjorgens. 

    I'm not a "know-it-all" I pray you don't think I am.  I've had to rally around myself (if that's possible lol) but I've had to research both problems because as unfortunate as it is, most doctors do not know much about sarcoid or sjorgens.  But, that is a good thing in ways, because you can find out a lot about yourself.  We have to be our own advocate until a time when all medical staff is knowledgeable about these terrible, debilitating diseases.

    This is my experience... 

    Everyone has a different story and this forum is helpful in that we can all lean on one another and listen....yes, listen, because many of us suffer in silence and are afraid of alienating ourselves from our family and friends.  So, with that said, it's safe here and no one is judgemental (well, they shouldn't be and if you're uncomfortable, just "holla" for a mediator by pressing the "report" icon ...it doesn't mean you're reporting or being a 'tattletale" hehe, just in need of some guidence  because we all deal with things differently...your way is good for you and my way is good for me, right?  But, sharing your way with me and me with you (and others) we learn and that's very important so we don't become complacent.  Anyway, I hope that you aren't scared away with my posts because as you see, they tend to be a bit lengthy but I guess I haven't found a way to put all this in a 2oz can...perhaps I'll read and learn how to do just that!! 

    Take care,

    frustrated..  (if you don't mind, please let me know what your doctor found out...I'm curious to see if it's been updated or just the same as it has been for many years...okie? )  believe me if I can find out more, I'd be so happy!

    • Squarky
      Squarky frustrated61

      Posted

      My doctor doesn't seem to follow up on anything I say,I showed him a flare up one day I had rash on shins lumps on arm and black in my tattoo swelled up......he said ehhhh weird isn't it and that was about it.....same as ENT he mentioned sarcoid but never followed it up..........docs tomorrow 
    • ailsa_june
      ailsa_june Squarky

      Posted

      Sorry Squarky, I just realised I have been calling you Sparky! rolleyes
  • rachael88657
    rachael88657 Squarky

    Posted

    Do I recognise some of those symptoms? You bet I do and seem to go round in circles, don't have the skin problems but this site is brilliant for moral support when you need it. Hang on in there we can all relate to your frustration
    • Squarky
      Squarky rachael88657

      Posted

      The doctor keeps ramming it down my neck about prednisolone dangers it's so frustrating as they help big style......
    • ailsa_june
      ailsa_june Squarky

      Posted

      Well obviously it's not your doctor who is suffering All drugs carry dangers but we don't stop using them to treat our diease because of this otherwise we'd never treat anything.

      It's your body and if you are happy to take them while observing for any nasty side effects then that is your decision and not his to make. Most of the side effects can be dealt with by reducing the dosage or even by taking other medication. For example the risk of getting osteoporosis can be helped by taking a drug call Alendronic Acid which by the way also has side effects.

      It definitely sounds like you need to change your GP. Please try what I suggested first though. I would square up to him if I were you and tell him it's not his body to make these decisions and it is your legal right to get treatment.

      A lot of GP's nonsense arguments are really to do with cost and nothing to do with health. You can read it in the newspaper every day - patient refused drug treatment because it was too expensive. It's going to cost him a damn site more if he doesn't treat you. What's he going to do if you end up with permanently scarred lungs? More importantly, what are you going to do, apart from sue him for negligence? If he still refuses after you have spoken to him, just get up and say, "Fine, I'm off to the A&E department and I will be informing them that you have refused to treat me." There was a system whereby GPs were black-listed for non treatment if patients came to A&E saying that their GP woudn't treat them. I'm pretty sure it will still be the same now. I once worked in Merseyside (Birkenhead area) and in the 90's we had a very long list of black-listed GPs. It's amazing how quickly they change their attitude once they have been told they are on a hospital's black list!

    • Squarky
      Squarky ailsa_june

      Posted

      I am sure I have been on the bone tablets before was it once a wk or month and you had to sit for half hr afterwards........deffo going to do this will post on my outcome.........thanks
    • ailsa_june
      ailsa_june Squarky

      Posted

      Yes those are the tablets. I was on them briefly and I'm not sure why I didn't get them again - probably due to money. I already have osteoporosis of the lumbar spinr too!
  • ailsa_june
    ailsa_june Squarky

    Posted

    Oh Sparky you poor thing.

    You and I are similar in that I have sacoid in my skin and was bringing up thick sticky green phlegm in the early days of the disease. I also have sarcoid in joints and nerves.

    It sounds like your doctor keeps taking you off the prednisolone. Am I right? He's a fool if he is because you will never get on top of the sarcoid this way. I think you need to write down everything that is happening to you now and demand that he sorts out some proper treatment for you now, not when he has read up on it. He is an idiot as he clearly doesn't think sarcoidosis is anything to worry about. You also need to ask, no tell him to refer you to a respiratory specialist as an emergency. Leaving you in this way is asking for problems to occur such a s scarring of the lung tissue. This scarring will not go away once you get it so it is very important to get proper help ASAP You also need some antibiotics if the phlegm is green because it is infected if it is green. I was put on Ciprofloxicin which treats infections of both the skin and lungs. I also was on high dose of prednisolone 60mg to start ten gradually reduced to a much lower dose but I was never stopped and you shouldn't be either. I am also on Seretide inhaler which also has steroid in it. It opens up the airways and it does seem to help break up the phlegm a bit so you can cough it up easier. I totally get how difficult you find it to breathe. I found it terribly difficult to get the phlegm as far as the spitting out stage. It was as though it was too sticky and clung to the sides of my airways. . It used to make me wretch because of this. Horrible!

    Get yourself down to the doctor tomorrow morning. I'm sure like many GP surgeries they can give you an emergency appointment - don't take no for an answer. No one should be left to suffer like this. It's shocking. As a patient you have rights such as the right to be treated for your illness. If your GP refuses to do any of this for you then you need to take yourself to A&E. Tell them your doctor isn't treating you and you can hardly breathe. At least this way you should get some help and a letter will go to your GP which should make him sit up and take notice. The only other thing I can suggest is to change your GP. A new GP is honour bound to give you a full physical as a new patient to his surgery.

    I hope this has been of some help. Let us know how you get on.

    kindest regards,

    June

    • Squarky
      Squarky ailsa_june

      Posted

      Thanks for the information I am deffo phoning doctors in the morning,it has been on my mind all weekend the way they fobbed me off as if I knew nothing.........
    • rachael88657
      rachael88657 ailsa_june

      Posted

      Reading your comments above was very interesting as the gunk that comes put of my head is revolting. Sometimes the  grey green "clots" are so big I feel as though my brains are being blown out. Scary to say the least . I've been asked for samples but cannot do the honours when blowing my nose. Will be talking to my GP tomorrow as waiting 2 months for ENT is ridiculous.
    • Squarky
      Squarky rachael88657

      Posted

      I have tried saline rinse and steroid drops for the 8 wks as asked by ENT but still have the build up in my throat , he even said had sarcoid been mentioned but even he made no follow up on that?...did a sample on Friday so should hear about that tue/wed
    • frustrated61
      frustrated61 Squarky

      Posted

      Hi Squarky ~ June is spot on with the sarcoidosis.  I also experienced many things you are dealing with too I have sarcoid in my lungs/lymph nodes/ears...that cartilidge between the nostrils...eyes...hair...my eyebrows completely fell out and I have dark hair so it did look strange...I had enough to deal with than to lose my eyebrows LOL....anyway, I don't  know how the doctors work in the UK ...I'm in the US and I would have flown off if my doctor said...i'll look into it....you can always say..."can you guarentee what I have won't get  worse or in my lungs or nodes or every place else on your body...tht's how I got mine to do a CT scan and from there I had a biopsy of the lungs and lymph nodes.  Get this...she had the nerve to ssay...I knew it was sarcoidosis...ohhhhhh really, then why were you dragging your feet (I didn't say that to her but she could tell I wasn't pleased)...

      I sure wish there were a place for all of us to meet and compare notes so this kind of treatment will stop!  Besides this fourm, I was on my own for so long then I just happened across this place by accident...am I happy I did!

      I have to get tests twice a year of my brain and heart...so you see with everyone in this forum having experienced the symptoms, it's nothing to goof around about...your doctor is in the "hall of shame" smile  Good luck!  

      HI!  JUNE!!! smile

       

    • Squarky
      Squarky frustrated61

      Posted

      This is what gets me frustrated as it's down in black/white my diagnosis from 2001 and treatment I was given but I even had a doctor tell me it was just acid reflux!!!......so sorry you are having such a bad time with your symptoms.
    • ailsa_june
      ailsa_june Squarky

      Posted

      Good for you. Remember to take your written list and questions with you because we all forget what we wanted to ask due to nerves or anger and you certainly have a right to be angry.

      Don't lose your temper because that will give him the excuse to send you out because you are being aggressive. Just be forthright and determined and he will ave to do something. You can always tell him you know what your rights are and that you are prepared to write to the British Medical Association about his lack of care.

      You don't need this stress because sarcoidosis feeds off stress too. I meant to say in my last post to remember to get lots of rest and to drink plenty of water. The water will help dilute secretions and thin down the phlegm so you can cough it up. Extra water should also help with dry eyes and mouth etc.

      I actually have to use artificial tears eye drops. Get them to prescribe you Celluvisc 1%. These drops do not contain preservatives which is good news because the other eye drops do contain preservatives which over time can also damage the eyes.

      I believe only taking oral steroids will resolve your problems because drops and inhalers etc don't often have very high doses of steroids in them sp aren't really going to resolve a problem as bad as yours.

    • ailsa_june
      ailsa_june rachael88657

      Posted

      To Rachael and everyone who has a problem coughing up phlegm. You can google - How to cough up phlegm and click on "How to cough up phlegm UHSM" This takes you to the University of South Manchester's website where  there is a video that takes you through the whole process. It is performed by a professional and definitely works so if you need to produce a specimen Rachael this will do the trick. It is literally impossible not to cough it up using their method. I found it very useful at times when I could feel the lumps of phlem just sitting there but couldn't get them to come up.

      I would also suggest that sitting over a bowl of boiling water with a towel over your head will also help loosen the phlegm. Just be super careful  and make sure the bowl of boiling water is on a steady, flat surface.

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