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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!!!

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  • morag7
    morag7 Squarky

    Posted

    Hi Squarky

    Sounds like a nasty of set of symptoms not being properly investigated.

    A course of oral steroids over several months (minimum) is about the only thing that's going to help if you have sarcoidosis - and it certainly sounds like it! And if it isn't its clearly something with very similar symptoms so probably the same drugs would help. 

    My GP told me once that the only reason for using inhalers for sarcoid is to ease any respiratory symptoms (asthma like) and wouldn't "cure" the disease or put it into remission. Inhalers are designed to get a drug into the lungs and nowhere else really, some of it will probably diffuse through but not in enough of a dose to make any significant difference. Oral steroids, on the other hand, will get into the circulation and travel all round the body to be able to help with any number of symptoms. 

    Hang on in there and just keep on telling them you want a referral to a respiratory consultant to look into and start treatment for sarcoidosis that has been mentioned by several specialists in the past but never been properly diagnosed. Polite but determined not to be fobbed off is the way to go in my opinion. 

    I'd say the same to everyone else having problems with GPs, specialists etc. Go for measured tones, polite but determined. As my father used to tell me It helps you feel in control if you can continue to sound calm - plus it really really winds up the other party ;-)

    • Squarky
      Squarky morag7

      Posted

      Sitting waiting to make phone call at 8.30 and hopefully sort something out today....
    • ailsa_june
      ailsa_june morag7

      Posted

      My doctor told me the same thing about inhalers Morag. I think there is about twopence worth of steroids in them but they do help to open up the airways so at least that is something.

      As you rightly said the best way is taking steroids orally in tablet form otherwise the disease has no chance of going into remission.

      I'm just back from the dentist. I definitely don't want to ever do that again. The dentist was amazing but as I already had a very sore mouth because of the sarcoid, the injections into the palate really hurt.

      Anyway the teeth are all out now so all I need to do is heal. She has put me on Miconazole cream as I have an infection in the corners of my mouth and she decided to give me Chlohexidine Gluconate to rinse with to see if it would clear up the soreness in my mouth. I had to laugh when she told me it tastes so bad I will be begging her to take me off it!

      I'm off to lie down now.

      Good luck Squarky for this afternoon hopefully a different doctor is just what is needed.

      June x

       

    • morag7
      morag7 ailsa_june

      Posted

      I've had chlorhexidine in the past. Dentist is correct, its disgusting! Even worse when its a sunny day and you left it on the window ledge in the bathroom so that when you take the next dose its also warm and disgusting!!

      Hope you recover quickly

    • ailsa_june
      ailsa_june morag7

      Posted

      UGH! and YUK! I will have to imagine it's strawberry flavoured or something ha ha! Thanks for the heads up though!razz look no teeth - gummy grin!
  • morag7
    morag7 Squarky

    Posted

    Hope the phone call went ok
    • Squarky
      Squarky morag7

      Posted

      3.40pm app with a doctor who I don't usually see but have been told he is straight to the point in getting things done.........hopefully
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