Sarcoidosis.

[Georgiesmum]

I there anyone else here suffering from sarcoidosis? How does it affect you? Have you been put on steroids by your consultant because of it?

[Mamyalynne]

Hi Georgismum, I hope you get some response to this - must be a very difficult situation.

I believe steroids are used to treat but beyond that I have no real idea.

[Georgiesmum]

Yes, I was diagnosed with sarcoidosis since 2008. At one time I was put on steroids for a year to help my lung disease. My consultant told me afterwards she had put me on the highest dose possible. The result was I put on a stone in weight. She said she was surprised I hadnt put on even more weight than that and that was the price I had to pay to get my lungs in a better shape. I would be interested to hear how others get on with this disease. There is no cure for it and i was told it affects one in every 100,000 people., and no. Ive never smoked and nor has any of my close family.

[BAKERS DOZEN]

Hi Geordiesmum. I have sarcoidosis of the lungs but I believe that there are other sorts. I only found out because I was having trouble with my eyes and had various tests to see what was causing it. First a blood test which did not show anything, then a TB test which was also negative and then a chest xray which should up the sarco. I have regular breathing tests and chest xrays which over the past three years have not shown any increase in the inflamation in my lungs so as yet I am not on any steroids. If it gets worse then I could be given steroids but my consultant is reluctant to give them to me because I am overweight and steroids would probably make the situation worse. I have had cataracts removed from both eyes but that was no problem and my eyes are great now.

[BAKERS DOZEN]

Like you I have never smoked, and I don't mean this to sound glib, butI have never suffered with it. Did not know I had anything wrong with my lungs until I was x-rayed.

[Georgiesmum]

Thank you for your answer, yes my sarcoidosis has affect my eyes now and i am registered blind although I do have a little sight. I took have regular chest xrays every six months as well as a breathing test each time..I have fou eye drops that I put in both eyes three times a day, but its done the trick and reduced the pressure in my eyes a lot.
Thank goodness for modern medicine!

[BAKERS DOZEN]

Are cataract operations not an option then? I had steroid injections into my eyes first of all but they did not work well enough so I had the operations. I have been seeing Prof Jones and his team at Manchester Eye Hosp and they are absolutely great. Where are you?

[Buenchico]

I'll start my post with an apology, as I fear that I might be wasting your time (by telling you something you already know).

However I wondered if you're aware that the charity Sarcoidosis UK ( http://sarcoidosisuk.org/ ) has local support groups across the UK, who might be able to help you?
http://sarcoidosisuk.org/support-groups/

Apologies, once again, if I've wasted your time.

[BAKERS DOZEN]

Many thanks Buenchico for that link. I was given details of the charity by the hospital but have not yet felt the need of their services. So sad to read about the problems that Georgiesmum has suffered and feel very lucky not to have it in such a severe state. I just have a few small patches of inflammed skin on my scalp which no-one can see. They are just like patches of dry skin which I have a steroid lotion for. It is not infectious and does not itch so maybe I have got off quite lightly compared to others. Very strange that the first sign of a lung/skin problem should show up in one's eyes but doctors said that as the eyes are the weakest part of the body that that is where a lot of problems first present themselves. I just had red, sore eyes one morning which I thought was conjunctivitis but eye drops did not clear it. Bright lights hurt my eyes and my GP sent me to Eye Hosp straight away thankfully. Absolutely amazed to be told I had a lung disease but thankfully, at the moment, under control.

[Georgiesmum]

Thank you all for your replies. Nothing to apologise for at all Bienchico, that was very helpful. My problem was found when I went for a regular eye test and my pressures in myt eyes ideally should have been 12 to 16 and mine were 58 in both eyes, so they sent me straight away to the hospital, they said it couldnt be left.