sarcoidosis

chef wrote: »

Hi guys

Has been a while but was waiting for some news, and TBH I dont really have any until tomorrow. Went back last week to hospital for the 3 month checkup, bloods,x-ray and PFT. Go to see the doc tomorrow for his opinions.
Well Ciarachino, I spent a month in the sun after diagnosis ( pre booked holiday), spent a good bit of time under umbrellas etc, but also a bit of time in the sun. I had no adverse affects that I could see ( fingers crossed)

Anyway so far not feeling to bad, still have a bit of a cough, but not so bad as originally.

Will keep you all posted tomorrow

Good luck all

Jay

kmulligan123@gmail.com wrote: »

hi would anybody know if i would get a medecal card as ihave sarcoidosis i never tried as i alway;s taught i would be refused 'thank;s

smccarrick wrote: »

Not 100% accurate. Some serious illnesses- such as various cancer diagnosis, automatically qualify for a medical card (I think they're processed automatically- you don't even apply).

sethasaurus wrote: »

I'd like to give my input, as I was diagnosed with sarc 3 years ago but refused steroids from the beginning. I am on a different treatment that is aimed at curing by re-enabling the body's ability to fight the cause of the disease, rather than treating symptoms (which is not a cure).

If you get acute onset sarc, you are luckier and will most likely not suffer as much as those with the insidious type (like I have).

Sarcies, on average, die 10-20 years beyond diagnosis (that is the number from WASOG, the sarc pulmonologists).
Most experienced doctors are aware that steroids don't cure sarc in the long run. I have talked to several specialists who have admitted it, but they really don't have any other ammo to throw at this disease, apart from wheelchairs, oxygen tanks, and lung transplants.
Apart from lung involvement, sarc can affect all parts of your body, organs, neurological systems, GI tract, everything.

The steroids do give you short-term palliation by suppressing your immune system. This makes you feel good and stops the symptoms your body would normally experience (fatigue, pain, shortness of breath, edemas).

If you take a look at the drug dosage information for prednisone, for example, the graph starts off with a high dose, then gradually lowers to the smallest dose, then nothing (which when the doc will be watching, fingers-crossed to see if you go into remission or not). The graph then continues and repeats itself.
This is the rollercoaster a lot of people ride, sometimes for years, while (usually) their fat deposits build up, hormones are thrown out of balance and the immune system is suppressed, which leads to more vulnerability to pathogens.

Some people are told to stay out of the sun, yet the doctors don't really know why this is (only from anecdotal evidence, that it helps people to feel less terrible).
The reason behind the sun affecting sarcies is actually known, although the science is complex and disputed by anyone who thinks vitamin D is good for you.

One thing that Vitamin D does is suppress your immune system, which makes you feel good. Some people are even addicted to the sun, and even sunbeds for the same reason. The rest of us are knocked flat by exposure to UV or Vitamin D because we have a particular disease process that is affected by it.

If your eyes are affected, my advice is at least get yourself some sunglasses that block a good portion of UVA and UVB light. This won't cure you but it will help.

The problem with chronic disease is that it is not like a flu or a broken leg. You may suffer the flu for a week and be back at work. You may catch some bacterial infection, go to the GP and get some antibiotics and be well within a month. You might break your leg, but in around 6 weeks you'll be back in action.

With chronic diseases like sarc, ME, etc, the condition has been building in your system for many years - sometimes 10, 20, 30 years before you see symptoms. Understandably, these are diseases that are not curable in a week, a month or even a year. Chronic disease can be especially insidious and affect many parts of you and will take a long time to heal, given you can tip the balance back in your favour.

Unfortunately, mostly, the medical community can supply a lot of "band-aids". Most drugs and treatments are useful for making people feel better while they battle something, but don't actually provide a cure. The human body, however is very good at healing itself, providing the healing mechanism hasn't been turned off. This is what happens in chronic disease.

I'm losing my train of thought now, as it's 3:30am, but I hope that makes sense to some of you.

After another round of steroids and relapse, will you be looking forward to doing it all again? I know people who have tried acupuncture, reiki, juicing (bad idea, btw), prayer, homeopathy and other options but they just won't work.
Everyone knows that no amount of positive attitude will grow back an arm, for example. Neither will it cure chronic disease. You need to tip the balance back in your favour to recover.