Acute or chronic sarcoidosis
Posted , 11 users are following.
Can anyone tell me how they can tell if sarcoidosis is acute or chronic? Thanks x
1 like, 27 replies
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Notes on Acute or chronic sarcoidosis
jean68563 gail_24648
Posted
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
gail_24648 jean68563
Posted
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
Thesufferer gail_24648
Posted
It's nothing short of a nightmare.
zss gail_24648
Posted
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.
gail_24648 zss
Posted
Thesufferer zss
Posted
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" ?
zss Thesufferer
Posted
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.
Magghe zss
Posted
thank zss! that sounds like the explanation I kinda got, even though they just diagnosed me this year, they are tracing it back to lung issues from years ago...so thats puts me on the verge of turning chronic I guess. thankfully lung cleared up though with not a lot of damage. They started me on high dose steroids before my diagnosis but after my late 2016 "attack" and I had horrible reactions. and am still trying to feel better from it. They put me on Acthar injections but I continued to get worse with my eye but the side effects from Achar though similar to Prednise were so very much better. but they took me off of that because my eye got worse...now Im waiting on the pre auth for the Humira and I started Methotrexate last weekend. have they discussed other options with you? Id be interested. Acthar is highly expensive but so very very much worth it as an alternative to prednisone. I was blessed to get asked to participate in an Acthar trial because I had a "virgin" system for drugs against my Sarc and I was unable to tolerate the prednisone. the study was for if it worked on Uveitis AND were the side effects better. the side effects were a lot better, they were there, but I actually had a decent quality of life....but it didn't work fast enough on the eye and when I produced 2 new hemrhages they pulled me and thats why they want to start me on the Methotrexate and the humira together....the pharmacist said she doesnt usually see both of those together...does anyone else take those two classes of meds? I haven't started the Humira yet but I will when its approved and it scares me .... but being totally blind scares me much, much more.
Simon3710 Magghe
Posted
tyagi gail_24648
Posted
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.
gail_24648 tyagi
Posted
Ruby76798 gail_24648
Posted
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...
gail_24648 Ruby76798
Posted
zss gail_24648
Posted
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.
tangles gail_24648
Posted
Tangles