Can anyone tell me how they can tell if sarcoidosis is acute or chronic? Thanks x
Hi Gail
I was told I had acute Sarcoidosis when I was diagnosed I also had erythema nodosum and lofgrens syndrome. I am just having a flare up on my legs and thighs which make it very difficult to walk at the moment. No one has ever explained to me what acute means although I have asked Drs they just look at me blank. Hopefully you may get some answers from someone else which I would be interested to read. Take care Jean
Hello Gail,
I'm not sure how you tell if you have just been diagnosed. Perhaps your specialist can give you some idea.
From what my specialist said, the acute Sarcoid hits very hard and with treatment, it spontaneously goes into remission within 2 years of intial diagnosis.
Chronic Sarcoid is a "slow burn" disease that progressively attacks the organ it has manifested itself in. It can spread to other organs. With treatment, it is only to control it's spread.
In my case, I have the chronic Pulmonary Sarcoidosis. I was diagnosed in 2008, and 5 years later, late 2013, it had spread. Two years of Prednisolone treatment followed. The first course failed and the Sarcoid flared again so I needed another 10 month treatement. In all 20 months of high doses of Prednisolone.
The damage to my lungs have left me permanently short of breath with a very tight, painful chest. I have chronic arthritis. I also have chronic Uvietis in both eyes that flares occasionally. This necessitates the use of Prednefrin (Prednisolone eyedrops). Other symptoms are chronic fatigue, indifferent sleeping patterns, and a greatly reduced appetite and indifference to food.
I guess mine "turned" from acute to chronic, when I failed to respond to the first 10 month course of Prednisolone. Within only 5 months of completing that in 2014. I was back on a second 10 month course in 2015. I spent all of 2016, recovering from the Prednisolone. I have never made a full recovery and now I have to go for further testing to determine if there is cardiac involvement.
I hope this helps in some way. Other people may experience different symptoms depending on what organ is involved.
Basically you can't. You only know you have Sarcoidosis.
If you're lucky, a course of treatment (or sheer luck) means that it is cured. That's acute Sarc.
On the other hand if the treatment doesn't eradicate it completely it may get worse, or go into remission for a while and recur later. This is the chronic form.
Usually the medics will monitor you for a while after the initial treatment to see whether or not you still have symptoms.
Hi Gail24648
I have recently been diagnosed with Acute Sarc. just over a week ago and just been wondering the same thing .. How do they really know if its Acute or not ??! My change in heart in questioning them is that my symptoms are presistant and are not responding to any meds iv been given (Anti-inflammatorys or Steroids) My symptoms eased at one point back in Feb. But are now back with a vengeance since about a month ago maybe more...
I dont no does it get worse before getting better or is this a sign that prehaps it is not Acute...
Hi Jean, sorry to hear what you are going through, there are some good answers here, it's all a bit of a nightmare though! X
Hi, thanks so much for your help, it is a complicated scary disease!
Hi tyagi, thank you for your help x
Hi ruby, I wonder if maybe it gets worse before it gets better, it is so complicated, am hopefully seeing specialist soon so will ask the questions, have a list, will report back, hope you feel better soon x
Tyagi is right, it is impossible to tell at the early stage at least. Only when you have gone through a treatment regime will you feel like you are improving. Blood tests and biopsies will confirm if indeed you have recovered form the Sarcoid.
As I was diagnosed with it 5 years before the first major flare up, it does suggest that I might have had chronic Sarcoidosis anyway. The problem was, in 2008 it was a small cluster of granuloma in my lungs and that was not possible to treat with Prednisolone as it was too small. I don't understand why, but that is what I was told.
My 2008 diagnosis was pure chance. At the time, I was having a severe episode with my chronic Asthma and needed X-ray images. It was these images that showed the clusters of granuloma in my lungs.
The 2013 diagnosis was after a week of feeling very unwell and the day before I went into the eye clinic for emergancy treatment on the Uveitis, my left eye had blown up blood shot and extremely painful. I was extremely fatigued as well. The Uveitis gave a clue to a very switched on trainee and she ordered some chest X-rays. It was these that showed a dramatic difference in the Sarcoidosis compared to 2008.
My specialist and I were optomistic after the first course of Prednisolone and generally feeling better with good test results, that it looked like I had recovered from it. Then it came back.
Acute is determinded when the symptoms come on suddenly, compared to those who have been there for years but not bad enough to do anything about them.
Tangles
This only makes me more scared. I don't know how you guys are managing.
It's nothing short of a nightmare.
I'm so sorry to hear this. So they've never tried to give you something else other than the prednisone?
What do you mean " recovering from Prednisolone" ?
When you take Prednisolone for long periods at high level doses, you can develop a cortisol deficiency due to your body winding back the natural production of cortisol.
This is essentially a Prednisolone induced form of Addison's Disease. It makes the already chronic fatigue from the Sarcoidosis, worse.
In my case, sleeping for very long periods and lack of energy when awake were the characteristics of my Prednisolone recovery. It can take the same time you were on Prednisolone to recover from it's effects.
Hello, Sarcoidosis is an insidious disease in that it can attack any organ in the body, including the skin and bone.
When it attacks, it assumes the symptoms and characteristics of other diseases. It is this, which makes treating Sarcoidosis so complicated. You are not able to actually treat the Sarcoidosis, only the damage it inflicts. Some doctors and specialists call it an auto-immune disease, because it is the immune system attacking your own body other doctors call it a connective tissue disease. The tissue that effectively holds you together and seperate other organs from one another.
Hi Gail 24648, I was diagnosed in 1986 after it took them 6 months to confirm but during that short time I became bed ridden for near on 4 months with chronic fatigue losing 30 plus kilo's of body weight to me it was Cronic as my lung efficiency was at less than 30% having excessive Lymph nodes obstructing my airways they had to go in to remove some of them to free me up also retrieving for biopsy, they hit this real hard with Steroids/Cortizone treatments many many tests from all parts of my body nothing was unchecked as Sarciodosis was last on their list as they had 5 bad things I could have had but ended up with what they said is a rare disease. So fo 5 years under treatments/testing, The side effects of the drugs they were in me I didn't much like them I started forming breast fat, my Spleen was enlarging also my hair was going grey (but I put that down to stress) I told them I want to go off these med's as they said I would be on them for life I told them I want to stop anyway I have been able to manage this just got to be aware the common cold can put me in Hospital, at this moment it's acute and live with constant joint pain, pimple blisters, congestion, burning eyes, excessive urination as I'm always sweating as I must replenish what is lost (they tell me I will eventually get kidney stones if I don't allow the kidney's to flush and itchyness all over my body that's so annoying so I would say now I have this acutely from what it was but most of all I keep a Positive outlook you have to, take care.
Sorry to hear about your suffering but do I take it that you feel better than when this started? I hope that's the case. So, you're not taking any meds any more?
Hello Chief, it doesn't get any better, does it.
I feel much better I've had No Steroids or Prednisolone since 1992, but in saying that I take caution if I have a Common Cold, Hayfever or Sinuses are playing up with what happened to me about 10 years ago I copped a bout of Pnumonia the only tell teale sign was I had had heavy congestion for about a week (but I have congestion most of the time) anyway I collapsed up in the mountains whist cutting some wood also I was losing energy for some reason anway to cut it short I was addmitted for 3 days to drain fluid out of my lungs the Dr said I was to from now on I must come in earlier if this were to occur again as it could have killed me. Seeing my lung capacity is only at best running at 75% been that way since that will never improve but must keep my breathing exercises keep them working so each year I must not forget my flu shot which I had not done prior to that episode, I'm only taking the usual blood pressure med's but take Sandomigran for my Bad Migraines, always had them before the Sarcoidosis and only recently taking a Cholesterol tablet & Vitamin D replacement as the Sarcoid has depleted my Vitamin D in my body also increased my Calcium output I'm also on Nexium plus one a day as I have had bad reflux ever since the early days of Sarcoidosis could have been the strong Steriod/Cortizone medication treatments I was on that caused that to happen, I have regular check-ups a big one each year for Bloods, Urine and X-Rays but see the Dr every 2 months or so but more so as my Wife sees him he will ask me how I'm going, he's a very good Dr and knows about Sarcoidosis as he had done a thesis on this when he was a training to become a Dr over in England. Today I would class myself much better but still feel like death at times but I just keep a positive outlook and have a better understanding of my triggers and when to get assistance if I'm really under the weather which in truth not that much these days as I have some support around me for back when I was diagnosed they were still pulling at straws and hoped that throwing heavy meds would fix it yes it did in some ways but I had the side effects and still show some to this day but on a scale 1 to 10 with ten being the worst going back to my darkest year in 1986, today I'm about a 1 or 2 today so yes I have somewhat got better but Sarcoidosis effects different things in different parts of the body and can effect each person differently, for my 31 odd years I personally know nobody apart from forums like this as it's still a lot of unknowns but I'm happy to share my experiances with those that have this horrid disease but I always have hope that one day there will be a cure for us but most of all I stay Positive in my life.